IPCOR 2 Data Dictionary

 

Data Dictionary IdentificationFormVariable IDColumn NameAllowed Values/Value RangeData Input
Type
2001ADTADTYNAndrogen Deprivation Therapy0 = No


1 = Yes


2 = Pending


9 = Not known
Drop-down list
2002ADTADTPrimSalPrimary or Salvage1 = Primary


2 = Salvage
Drop-down list
2003ADTADTTypeADT Type1 = Chemical


2 = Surgical
Drop-down list
2004ADTADTCheAgentADT Agent1 = Abiraterone (Zytiga)


2 = Bicalutamide (Cosudex)


3 = Buserelin Acetate (Superfact)


4 = Cyproterone Acetate (Androcur)


5 = Degarelix (Firmagon)


6 = Enzalutamide (Xtandi)


7 = Estramustine (Emcyt)


8 = Flutamide


9 = Histrelin (Vantas, Supprelin LA)


10 = Goserelin (Zoladex)


11 = Ketoconazole


12 = Leuprolide (Lupron Depot, Lupron Depot-Ped, Viadur, Eligard, Lucrin)


13 = Nilutamide (Nilandron, Anandron)


14 = Triptorelin Embonate (Diphereline)


15 = Triptorelin Pamoate (Trelstar)


16 = Other


17 = Apalutamide (Erleada, ARN-509)


18 = Triptorelin Acetate


19 = Relugolix (RVT-601, Relumina)


20 = Darolutamide (ODM-201, Nubeqa)


-1 = Unknown
Drop-down list
2005ADTADTCheAgentOthIf other, specifyNAText
2006ADTADTStartDTStart Date of ADTNADate
2007ADTADTStopDtStop Date of ADTNADate
2008ADTADTStopReasonReason for stopping treatment1 = Planned (completion)


2 = Unplanned (toxicity)


3 = Unplanned (progression)


4 = Other
Drop-down list
2009ADTADTStopReasonNotesReason for stopping treatment notesNAText
2010ADTADTPSAStatusPSA Status1 = Taken


2 = Not taken
Drop-down list
2011ADTADTPSAPSA levelNADrop-down list
2012ADTADTClnClinicianNASearch list
2013ADTADTInstTreatment InstituteNADrop-down list
2014ADTADTClinicalTrialIs participant enrolled in a Clinical Trial?1 = Yes


0 = No


-1 = Not stated
Drop-down list
2015ADTADTTrialNumberTrial NumberNAText
2016ADTComplicationYNPatient experienced a CTCAE grade 3 or 4 complication during treatment0 = No


1 = Yes
List of values
2017ADTFatigueFatigue0 = No


1 = Grade 3


2 = Grade 4
Drop-down list
2018ADTDermatitisDermatitis0 = No


1 = Grade 3


2 = Grade 4
Drop-down list
2019ADTDiarrhoeaDiarrhoea0 = No


1 = Grade 3


2 = Grade 4
Drop-down list
2020ADTAbdominalPainAbdominal Pain0 = No


1 = Grade 3


2 = Grade 4
Drop-down list
2021ADTRectalMucositisRectal Mucositis0 = No


1 = Grade 3


2 = Grade 4
Drop-down list
2022ADTProctitisProctitis0 = No


1 = Grade 3


2 = Grade 4
Drop-down list
2023ADTHotFlashesHot Flashes0 = No


1 = Grade 3


2 = Grade 4
Drop-down list
2024ADTCystitisNonInfectiveCystitis Non-Infective0 = No


1 = Grade 3


2 = Grade 4
Drop-down list
2025ADTUrinaryRetentionUrinary Retention0 = No


1 = Grade 3


2 = Grade 4
Drop-down list
2026ADTOtherChkOther domain, specifyNABoolean
2027ADTOtherOther domain, specify (Text)NAText
2028ADTOtherGradeOther domain, specify (Grade)0 = No


1 = Grade 3


2 = Grade 4
Drop-down list
2029ADTComplicationsTablePlease specify complications domains and gradeNATable of items
2030Additional ADTADTTypeADT Type1 = Chemical


2 = Surgical
Drop-down list
2031Additional ADTADTCheAgentADT Agent1 = Abiraterone (Zytiga)


2 = Bicalutamide (Cosudex)


3 = Buserelin Acetate (Superfact)


4 = Cyproterone Acetate (Androcur)


5 = Degarelix (Firmagon)


6 = Enzalutamide (Xtandi)


7 = Estramustine (Emcyt)


8 = Flutamide


9 = Histrelin (Vantas, Supprelin LA)


10 = Goserelin (Zoladex)


11 = Ketoconazole


12 = Leuprolide (Lupron Depot, Lupron Depot-Ped, Viadur, Eligard, Lucrin)


13 = Nilutamide (Nilandron, Anandron)


14 = Triptorelin Embonate (Diphereline)


15 = Triptorelin Pamoate (Trelstar)


16 = Other


17 = Apalutamide (Erleada, ARN-509)


18 = Triptorelin Acetate


19 = Relugolix (RVT-601, Relumina)


20 = Darolutamide (ODM-201, Nubeqa)


-1 = Unknown
Drop-down list
2032Additional ADTADTCheAgentOthIf other, specifyNAText
2033Additional ADTADTStartDTStart Date of ADTNADate
2034Additional ADTADTStartDtAccAccuracy of start date1 = AAA


2 = AAE


3 = AAU


4 = AEE


5 = AEU


6 = AUU


7 = AUA


8 = AUE


9 = AEA


10 = EAA


11 = EAE


12 = EAU


13 = EEA


14 = EEE


15 = EEU


16 = EUA


17 = EUE


18 = EUU


19 = UAA


20 = UAE


21 = UAU


22 = UEA


23 = UEE


24 = UEU


25 = UUA


26 = UUE


27 = UUU
Drop-down list
2035Additional ADTADTCheOngoingTreatment ongoing0 = Completed


1 = Treatment ongoing


2 = Unknown


-2 = Not stated
Drop-down list
2036Additional ADTADTStopDtStop Date of ADTNADate
2037Additional ADTADTStopAccAccuracy of stop date1 = AAA


2 = AAE


3 = AAU


4 = AEE


5 = AEU


6 = AUU


7 = AUA


8 = AUE


9 = AEA


10 = EAA


11 = EAE


12 = EAU


13 = EEA


14 = EEE


15 = EEU


16 = EUA


17 = EUE


18 = EUU


19 = UAA


20 = UAE


21 = UAU


22 = UEA


23 = UEE


24 = UEU


25 = UUA


26 = UUE


27 = UUU
Drop-down list
2038Additional ADTADTPSAStatusPSA Status1 = Taken


2 = Not taken
Drop-down list
2039Additional ADTADTPSAPSA levelNADrop-down list
2040Additional ADTADTClnClinicianNASearch list
2041Additional ADTADTInstTreatment InstituteNADrop-down list
2042Biopsyconsent_reminderReminder for returning urine sample1 = Yes


0 = No
List of values
2043Biopsyreminder_dateDate for sending reminder for urine sampleNADate
2044Biopsycollected_urineUrine sample collected0 = No consent


2 = Pending


1 = Yes


3 = Destroyed
Drop-down list
2045Biopsycollected_bloodBlood sample collected0 = No consent


2 = Pending


1 = Yes


3 = Destroyed
Drop-down list
2046Biopsysample_id_urineUrine sample IDNAText
2047Biopsysample_id_bloodBlood sample IDNAText
2048Biopsysample_id_tissueTissue sample IDNAText
2049BiopsyAsDtDate of biopsyNADate
2050BiopsyDateOfReferralDate of ReferralNADate
2051BiopsybiopsyInstBiopsy instituteNADrop-down list
2052BiopsyPSAStatusPSA Status1 = Taken


2 = Not taken
Drop-down list
2053BiopsyPSALevelPSA LevelNADrop-down list
2054BiopsyLateralityLaterality1 = Left


2 = Right


3 = Both


-1 = Not stated
Drop-down list
2055BiopsyTumourPresYNPresence of tumour0 = No


1 = Yes
Drop-down list
2056BiopsyClinInType1Bone scanNABoolean
2057BiopsyClinInType2MRINABoolean
2058BiopsyClinInType3CTNABoolean
2059BiopsyClinInType4OtherNABoolean
2060BiopsyClinInOthIf Other, specifyNAText
2061BiopsyClinInType5PETNABoolean
2062BiopsyClinInType6USNABoolean
2063BiopsyClinInType7Not KnownNABoolean
2064BiopsyMetHisTypeMetastatic Histology Procedure1 = Lymph node biopsy


2 = Bone Biopsy


3 = Lung Biopsy


4 = Brain biopsy


5 = Liver biopsy


6 = Other
Drop-down list
2065BiopsyMetHisOthIf Other, specifyNAText
2066BiopsyDiagScrYNInitial testing: Screen/Symptomatic1 = Asymptomatic (detected through routine screening)


2 = Symptomatic (presented with symptoms)


3 = Unknown


4 = Co-incidental finding
Drop-down list
2067BiopsyDiagMorph1Histology Type 11 = 8140/3 = Adenocarcinoma


2 = 8480/3 = Mucinous (colloid)


3 = 8490/3 = Signet ring-like cell


6 = 8500/3 = Ductal adenocarcinoma


7 = 8120/3 = Urothelial carcinoma


8 = 8560/3 = Adenosquamous carcinoma


9 = 8070/3 = Squamous cell carcinoma


11 = 8147/3 = Basal cell carcinoma


12 = 8574/3 = Adenocarcinoma with neuroendocrine differentiation


13 = 8240/3 = Well differentiated neuroendocrine tumour


14 = 8041/3 = Small-cell neuroendocrine carcinoma


20 = 8572/3 = Sarcomatoid


21 = 8500/2 = Intraductal carcinoma


99 = Other


100 = Unknown
Drop-down list
2068BiopsyDiagMorphOther1Histology Type 1 (Other)NAText
2069BiopsyDiagMorph2Histology Type 21 = 8140/3 = Adenocarcinoma


2 = 8480/3 = Mucinous (colloid)


3 = 8490/3 = Signet ring-like cell


6 = 8500/3 = Ductal adenocarcinoma


7 = 8120/3 = Urothelial carcinoma


8 = 8560/3 = Adenosquamous carcinoma


9 = 8070/3 = Squamous cell carcinoma


11 = 8147/3 = Basal cell carcinoma


12 = 8574/3 = Adenocarcinoma with neuroendocrine differentiation


13 = 8240/3 = Well differentiated neuroendocrine tumour


14 = 8041/3 = Small-cell neuroendocrine carcinoma


20 = 8572/3 = Sarcomatoid


21 = 8500/2 = Intraductal carcinoma


99 = Other


100 = Unknown
Drop-down list
2070BiopsyDiagMorphOther2Histology Type 2 (Other)NAText
2071BiopsyDiagMorph3Histology Type 31 = 8140/3 = Adenocarcinoma


2 = 8480/3 = Mucinous (colloid)


3 = 8490/3 = Signet ring-like cell


6 = 8500/3 = Ductal adenocarcinoma


7 = 8120/3 = Urothelial carcinoma


8 = 8560/3 = Adenosquamous carcinoma


9 = 8070/3 = Squamous cell carcinoma


11 = 8147/3 = Basal cell carcinoma


12 = 8574/3 = Adenocarcinoma with neuroendocrine differentiation


13 = 8240/3 = Well differentiated neuroendocrine tumour


14 = 8041/3 = Small-cell neuroendocrine carcinoma


20 = 8572/3 = Sarcomatoid


21 = 8500/2 = Intraductal carcinoma


99 = Other


100 = Unknown
Drop-down list
2072BiopsyDiagMorphOther3Histology Type 3 (Other)NAText
2073BiopsyDiagGle1Gleason Score1 = 1


2 = 2


3 = 3


4 = 4


5 = 5


-1 = Not stated


-2 = No pathology report


-3 = Insufficient sample
Drop-down list
2074BiopsyDiagGle2+1 = 1


2 = 2


3 = 3


4 = 4


5 = 5


-1 = Not stated


-2 = No pathology report


-3 = Insufficient sample
Drop-down list
2075BiopsyDiagGleSum=NAInteger
2076BiopsyMRIStatusMRI status0 = No


1 = Yes


9 = Not known
Drop-down list
2077BiopsyMRIDetailsMRI DetailsNADrop-down list
2078BiopsyPSAVolumeProstate volumeNAReal
2079BiopsyPSADensityPSA densityNAReal
2080BiopsyCurCa1No current cancerNABoolean
2081BiopsyCurCa2BladderNABoolean
2082BiopsyCurCa3BrainNABoolean
2083BiopsyCurCa4Bone (sarcoma)NABoolean
2084BiopsyCurCa5Bowel (colorectal)NABoolean
2085BiopsyCurCa6Endocrine (thyroid)NABoolean
2086BiopsyCurCa7KidneyNABoolean
2087BiopsyCurCa8LiverNABoolean
2088BiopsyCurCa9Lung inc asbestosNABoolean
2089BiopsyCurCa10Melanoma (skin)NABoolean
2090BiopsyCurCa11TestesNABoolean
2091BiopsyCurCa12Current cancer - site not specifiedNABoolean
2092BiopsyCurCa13Other current cancer (describe)NABoolean
2093Biopsyv5NANAGroup of Booleans
2094BiopsyCurCaOTHIf other, specifyNAText
2095BrachytherapyBraYNBrachytherapy0 = No


1 = Yes


2 = Pending


9 = Not known
Drop-down list
2096BrachytherapyBraPrimSalPrimary or Salvage1 = Primary


2 = Salvage
Drop-down list
2097BrachytherapyLdrYNLDR Brachytherapy0 = No


1 = Yes
Drop-down list
2098BrachytherapyHdrYNHDR Brachytherapy0 = No


1 = Yes
Drop-down list
2099BrachytherapyBraUnkUnknown Type Brachytherapy0 = No


1 = Yes
Drop-down list
2100BrachytherapyBraDtDate of BrachytherapyNADate
2101BrachytherapyBraRtDoseTotal dose (Gy)NAReal
2102BrachytherapyBraPSAStatusPSA Status1 = Taken


2 = Not taken
Drop-down list
2103BrachytherapyBraPSAPSA levelNADrop-down list
2104BrachytherapyBraClinRadiation OncologistNASearch list
2105BrachytherapyBraInstTreatment InstituteNADrop-down list
2106BrachytherapyBraClinicalTrialIs participant enrolled in a Clinical Trial?1 = Yes


0 = No


-1 = Not stated
Drop-down list
2107BrachytherapyBraTrialNumberTrial NumberNAText
2108BrachytherapyComplicationYNPatient experienced a CTCAE grade 3 or 4 complication during treatment0 = No


1 = Yes
Drop-down list
2109BrachytherapyFatigueFatigue0 = No


1 = Grade 3


2 = Grade 4
Drop-down list
2110BrachytherapyDermatitisDermatitis0 = No


1 = Grade 3


2 = Grade 4
Drop-down list
2111BrachytherapyDiarrhoeaDiarrhoea0 = No


1 = Grade 3


2 = Grade 4
Drop-down list
2112BrachytherapyAbdominalPainAbdominal Pain0 = No


1 = Grade 3


2 = Grade 4
Drop-down list
2113BrachytherapyRectalMucositisRectal Mucositis0 = No


1 = Grade 3


2 = Grade 4
Drop-down list
2114BrachytherapyProctitisProctitis0 = No


1 = Grade 3


2 = Grade 4
Drop-down list
2115BrachytherapyHotFlashesHot Flashes0 = No


1 = Grade 3


2 = Grade 4
Drop-down list
2116BrachytherapyCystitisNonInfectiveCystitis Non-Infective0 = No


1 = Grade 3


2 = Grade 4
Drop-down list
2117BrachytherapyUrinaryRetentionUrinary Retention0 = No


1 = Grade 3


2 = Grade 4
Drop-down list
2118BrachytherapyOtherChkOther domain, specifyNABoolean
2119BrachytherapyOtherOther domain, specify domainNAText
2120BrachytherapyOtherGradeOther domain, specify grade0 = No


1 = Grade 3


2 = Grade 4
Drop-down list
2121Brachytherapytable3NANATable of items
2122ChemotherapyCheYNChemotherapy0 = No


1 = Yes


2 = Pending


9 = Not known
Drop-down list
2123ChemotherapyCheDtStart date of ChemotherapyNADate
2124ChemotherapyCheStopDtStop date of ChemotherapyNADate
2125ChemotherapyCheStopReasonReason for stopping treatment1 = Planned (completion)


2 = Unplanned (toxicity)


3 = Unplanned (progression)


4 = Other
Drop-down list
2126ChemotherapyCheStopReasonNotesReason for stopping treatment notesNAText
2127ChemotherapyChePSAStatusPSA Status1 = Taken


2 = Not taken
Drop-down list
2128ChemotherapyChePSAPSA levelNADrop-down list
2129ChemotherapyCheClinMedical OncologistNASearch list
2130ChemotherapyCheInstTreatment InstituteNADrop-down list
2131ChemotherapyCheBoneAgentsWere bone agents used?1 = Yes


0 = No


-1 = Not stated
Drop-down list
2132ChemotherapyCheBoneAgentUsedBone agent used1 = Zoledronic Acid


2 = Denosumab


3 = Alpharidin


4 = Calcichew


5 = Other
Drop-down list
2133ChemotherapyCheBoneAgentOtherBone agent used, otherNAText
2134ChemotherapyCheAgentAgent used1 = Abiraterone


2 = Enzalutamide


3 = Darolutamide


4 = Other
Drop-down list
2135ChemotherapyCheAgentNotesAgent notesNAText
2136ChemotherapyCheClinicalTrialIs participant enrolled in a Clinical Trial?1 = Yes


0 = No


-1 = Not stated
Drop-down list
2137ChemotherapyCheTrialNumberTrial NumberNAText
2138ChemotherapyComplicationYNPatient experienced a CTCAE grade 3 or 4 complication during treatment0 = No


1 = Yes
List of values
2139ChemotherapyFatigueFatigue0 = No


1 = Grade 3


2 = Grade 4
Drop-down list
2140ChemotherapyDermatitisDermatitis0 = No


1 = Grade 3


2 = Grade 4
Drop-down list
2141ChemotherapyDiarrhoeaDiarrhoea0 = No


1 = Grade 3


2 = Grade 4
Drop-down list
2142ChemotherapyAbdominalPainAbdominal Pain0 = No


1 = Grade 3


2 = Grade 4
Drop-down list
2143ChemotherapyRectalMucositisRectal Mucositis0 = No


1 = Grade 3


2 = Grade 4
Drop-down list
2144ChemotherapyProctitisProctitis0 = No


1 = Grade 3


2 = Grade 4
Drop-down list
2145ChemotherapyHotFlashesHot Flashes0 = No


1 = Grade 3


2 = Grade 4
Drop-down list
2146ChemotherapyCystitisNonInfectiveCystitis Non-Infective0 = No


1 = Grade 3


2 = Grade 4
Drop-down list
2147ChemotherapyUrinaryRetentionUrinary Retention0 = No


1 = Grade 3


2 = Grade 4
Drop-down list
2148ChemotherapyOtherChkOther domain, specifyNABoolean
2149ChemotherapyOtherOther domain, specify (Text)NAText
2150ChemotherapyOtherGradeOther domain, specify (Grade)0 = No


1 = Grade 3


2 = Grade 4
Drop-down list
2151ChemotherapyComplicationsTablePlease specify complications domains and gradeNATable of items
2152DemographicconsentVerbal consentNABoolean
2153DemographicdoNotContactDo not contactNABoolean
2154DemographiccontactedByContacted byDrop-down list
2155DemographiccontactedAtContacted atNADate Time
2156DemographicNmGiven nameNAText
2157DemographicMddleNmMiddle nameNAText
2158DemographicLstNmFamily nameNAText
2159DemographicDOBDate of BirthNADate
2160DemographicappointmentDateAppointment dateNADate
2161DemographicappointmentTimeAppointment timeNATime
2162DemographicAddress1Address 1NAText
2163DemographicAddress2Address 2NAText
2164DemographicCountyCounty1 = Antrim


2 = Armagh


3 = Carlow


4 = Cavan


5 = Clare


6 = Cork


7 = Derry


8 = Donegal


9 = Down


10 = Dublin


11 = Fermanagh


12 = Galway


13 = Kerry


14 = Kildare


15 = Kilkenny


16 = Laois


17 = Leitrim


18 = Limerick


19 = Longford


20 = Louth


21 = Mayo


22 = Meath


23 = Monaghan


24 = Offaly


25 = Roscommon


26 = Sligo


27 = Tipperary


28 = Tyrone


29 = Waterford


30 = Westmeath


31 = Wexford


32 = Wicklow
Drop-down list
2165DemographicEircodeEircodeNAText
2166DemographicAddNKAddress not knownNABoolean
2167DemographicNOFXAddNo fixed addressNABoolean
2168DemographicPtEmailEmail addressNAText
2169DemographicnoEmailNo known email addressNABoolean
2170DemographiccountryCodeCountry codeNAText
2171DemographicprimaryPhonePrimary phone numberNAText
2172DemographicsecondaryPhoneSecondary phone numberNAText
2173DemographicpreferredMethodPROMsPreferred method for receiving PROMs1 = Email


2 = Post


3 = N/A
Drop-down list
2174DemographicpreferredMethodContactPreferred method to be contacted1 = Email


2 = Post


3 = Phone


4 = SMS


5 = N/A
Drop-down list
2175DemographicGMSGMS numberNAText
2176DemographicprimaryConsultantPrimary consultant (urologist)NASearch list
2177DemographicRefDateReferral dateNADate
2178DemographiccurrentGPCurrent GPNAText
2179DemographicpracticeGPGP Practice NameNAText
2180DemographicemailGPGP email addressNAText
2181DemographicvitalStatusVital status0 = Alive


1 = Dead


5 = Dead (not confirmed)


9 = Not known
Drop-down list
2182DemographicdodDate of deathNADate
2183DemographiccodCause of deathNAText
2184DemographicptSmokingSmoking statusC = Current smoker


N = Never smoked


X = Ex smoker


Z = Participant declines to answer
Drop-down list
2185DemographicEthnicityEthnicity1 = Irish


2 = Irish Traveller


3 = Roma


4 = Any other White background


5 = African


6 = Any other Black background


7 = Chinese


8 = Indian/Pakistani/Bangladeshi


9 = Any other Asian background


10 = Arabic


11 = Mixed, write in description


12 = Other, write in description
Drop-down list
2186DemographicEthnicityOtherTextEthnicity, otherNAText
2187DemographicPrefLanPreferred languageNADrop-down list
2188DemographicfamilyDegreeFirst degree family member diagnosed with cancer1 = Parent


2 = Sibling


3 = Child


4 = No


99 = Unknown


-1 = Participant declines to answer
Drop-down list
2189DemographicfamilyAgeAge when first degree family member diagnosed with cancer1 = < 65 years


2 = >= 65 years


99 = Unknown


-1 = Participant declines to answer
Drop-down list
2190DiagnosisDiagInstDiagnosing instituteNADrop-down list
2191DiagnosisDiagClinDiagnosing ClinicianNASearch list
2192DiagnosisDiagPSAStatusPSA Status1 = Taken


2 = Not taken
Drop-down list
2193DiagnosisDiagPSALevelPSA LevelNADrop-down list
2194DiagnosisDiagDtDate of diagnosisNADate
2195DiagnosisAgeDiagAge at DiagnosisNAReal
2196DiagnosisYrsPrCaYears living with Prostate CancerNAReal
2197DiagnosisYrsPrCaDthYears living with Prostate Cancer at time of deathNAReal
2198DiagnosisDiagMethMethod of diagnosis1 = TRUS


2 = TURP


3 = TURBT


4 = Transperineal biopsy


5 = Clinical Investigation (eg Bone scan, CT, MRI)


6 = Histology of metastatic site (bone biopsy Lymph node biopsy)


7 = Prostatectomy (simple,diagnostic)


8 = Other


9 = Unknown


10 = Cystoprostatectomy
Drop-down list
2199DiagnosisDiagMethOthIf Other, SpecifyNAText
2200DiagnosisClinInType1Bone scanNABoolean
2201DiagnosisClinInType2MRINABoolean
2202DiagnosisClinInType3CTNABoolean
2203DiagnosisClinInType4OtherNABoolean
2204DiagnosisClinInOthIf Other, specifyNAText
2205DiagnosisClinInType5PETNABoolean
2206DiagnosisClinInType6USNABoolean
2207DiagnosisClinInType7Not KnownNABoolean
2208DiagnosisMetHisTypeMetastatic Histology Procedure1 = Lymph node biopsy


2 = Bone Biopsy


3 = Lung Biopsy


4 = Brain biopsy


5 = Liver biopsy


6 = Other
Drop-down list
2209DiagnosisMetHisOthIf Other, specifyNAText
2210DiagnosisDiagMorph1Histology Type 11 = 8140/3 = Adenocarcinoma


2 = 8480/3 = Mucinous (colloid)


3 = 8490/3 = Signet ring-like cell


6 = 8500/3 = Ductal adenocarcinoma


7 = 8120/3 = Urothelial carcinoma


8 = 8560/3 = Adenosquamous carcinoma


9 = 8070/3 = Squamous cell carcinoma


11 = 8147/3 = Basal cell carcinoma


12 = 8574/3 = Adenocarcinoma with neuroendocrine differentiation


13 = 8240/3 = Well differentiated neuroendocrine tumour


14 = 8041/3 = Small-cell neuroendocrine carcinoma


20 = 8572/3 = Sarcomatoid


21 = 8500/2 = Intraductal carcinoma


99 = Other


100 = Unknown
Drop-down list
2211DiagnosisDiagMorphOther1Histology Type 1 (Other)NAText
2212DiagnosisDiagMorph2Histology Type 21 = 8140/3 = Adenocarcinoma


2 = 8480/3 = Mucinous (colloid)


3 = 8490/3 = Signet ring-like cell


6 = 8500/3 = Ductal adenocarcinoma


7 = 8120/3 = Urothelial carcinoma


8 = 8560/3 = Adenosquamous carcinoma


9 = 8070/3 = Squamous cell carcinoma


11 = 8147/3 = Basal cell carcinoma


12 = 8574/3 = Adenocarcinoma with neuroendocrine differentiation


13 = 8240/3 = Well differentiated neuroendocrine tumour


14 = 8041/3 = Small-cell neuroendocrine carcinoma


20 = 8572/3 = Sarcomatoid


21 = 8500/2 = Intraductal carcinoma


99 = Other


100 = Unknown
Drop-down list
2213DiagnosisDiagMorphOther2Histology Type 2 (Other)NAText
2214DiagnosisDiagMorph3Histology Type 31 = 8140/3 = Adenocarcinoma


2 = 8480/3 = Mucinous (colloid)


3 = 8490/3 = Signet ring-like cell


6 = 8500/3 = Ductal adenocarcinoma


7 = 8120/3 = Urothelial carcinoma


8 = 8560/3 = Adenosquamous carcinoma


9 = 8070/3 = Squamous cell carcinoma


11 = 8147/3 = Basal cell carcinoma


12 = 8574/3 = Adenocarcinoma with neuroendocrine differentiation


13 = 8240/3 = Well differentiated neuroendocrine tumour


14 = 8041/3 = Small-cell neuroendocrine carcinoma


20 = 8572/3 = Sarcomatoid


21 = 8500/2 = Intraductal carcinoma


99 = Other


100 = Unknown
Drop-down list
2215DiagnosisDiagMorphOther3Histology Type 3 (Other)NAText
2216DiagnosisDiagGle1Gleason Score1 = 1


2 = 2


3 = 3


4 = 4


5 = 5


-1 = Not stated


-2 = No pathology report


-3 = Insufficient sample
Drop-down list
2217DiagnosisDiagGle2+1 = 1


2 = 2


3 = 3


4 = 4


5 = 5


-1 = Not stated


-2 = No pathology report


-3 = Insufficient sample
Drop-down list
2218DiagnosisDiagGleSum=NAInteger
2219DiagnosisCribriformPatternPresentCribriform Morphology Pattern Present1 = Yes


0 = No


-1 = Not stated
Drop-down list
2220DiagnosisPatternPercentPercentage of Pattern 41 = < 5%


2 = 10%


3 = 20%


4 = 30%


5 = 50%


6 = > 50%


7 = 100%


8 = Other
Drop-down list
2221DiagnosisPatternPercentOtherPercentage of Pattern 4, otherNAInteger
2222DiagnosisDiagCoresPosNumber of positive coresNAInteger
2223DiagnosisDiagCoresTotTotal Number of coresNAInteger
2224DiagnosisDiagCoresPerPos% positive coresNAInteger
2225DiagnosisDiagCoresInvolGreatest % cancer involvement in any one biopsy core at time of diagnosisNAInteger
2226DiagnosisPeriNeuYNPerineural Invasion0 = No


1 = Yes


-1 = Not stated


-2 = No pathology report
Drop-down list
2227DiagnosisLymvasYNLymphovascular Invasion0 = No


1 = Yes


-1 = Not stated


-2 = No pathology report
Drop-down list
2228DiagnosisExtProsYNExtraprostatic Invasion0 = No


1 = Yes


-1 = Not stated


-2 = No pathology report
Drop-down list
2229DiagnosisSVInvYNSeminal Vesicle Invasion0 = No


1 = Yes


-1 = Not stated


-2 = No pathology report
Drop-down list
2230DiagnosisDiagMRIStatusMRI status0 = No


1 = Yes


9 = Not known
Drop-down list
2231DiagnosisDiagMRIDetailsMRI DetailsNADrop-down list
2232DiagnosisPSAVolumeProstate volumeNAReal
2233DiagnosisPSADensityPSA densityNAReal
2234DiagnosisClinTYNClinical T stage status0 = DRE not taken


1 = DRE taken


2 = DRE refused by patient
Drop-down list
2235DiagnosisClinTOutcomeClinical T stage outcome1 = Unremarkable


2 = Abnormal findings (enlarged, nodules, hardness etc)


3 = Other
Drop-down list
2236DiagnosisClinTOutcomeOtherClinical T stage outcome, otherNAText
2237DiagnosisDiagcTPathological T stage1 = TX (cannot be assessed)


2 = T0


3 = T1


4 = T1a


5 = T1b


6 = T1c


7 = T2


8 = T2a


9 = T2b


10 = T2c


11 = T3


12 = T3a


13 = T3b


14 = T4


15 = T4a


16 = T4b
Drop-down list
2238DiagnosisDiagcNPathological N stage1 = NX


2 = N0


3 = N1
Drop-down list
2239DiagnosisDiagcMPathological M stage1 = MX


2 = M0


3 = M1a


4 = M1b


5 = M1c


7 = M1
Drop-down list
2240DiagnosisDiagRdBoneBone scanNABoolean
2241DiagnosisDiagRdBoneScanDtDate of Bone scanNADate
2242DiagnosisDiagRdBoneScanFindingsBone scan findings1 = Normal


2 = Abnormal
Drop-down list
2243DiagnosisDiagRdBoneScanNotesBone scan findings, notesNAText memo
2244DiagnosisDiagRdPetPETNABoolean
2245DiagnosisDiagRdPetDtDate of PET scanNADate
2246DiagnosisDiagRdPetFindingsPET scan findings1 = Normal


2 = Abnormal
Drop-down list
2247DiagnosisDiagRdPetNotesPET scan findings, notesNAText memo
2248DiagnosisDiagRdCTCTNABoolean
2249DiagnosisDiagRdCTDtDate of CTNADate
2250DiagnosisDiagRdCTFindingsCT findings1 = Normal


2 = Abnormal
Drop-down list
2251DiagnosisDiagRdCTNotesCT findings, notesNAText memo
2252DiagnosisDiagRdPSMAPSMA PETNABoolean
2253DiagnosisDiagRdPSMADtDate of PSMA PETNADate
2254DiagnosisDiagRdPSMAFindingsPSMA PET findings1 = Normal


2 = Abnormal
Drop-down list
2255DiagnosisDiagRdPSMANotesPSMA PET findings, notesNAText memo
2256DiagnosisDiagRdNoNo radiology test done. N & M staging were assigned based on clinical assessmentNABoolean
2257DiagnosisDiagRdOtherOther, specifyNABoolean
2258DiagnosisDiagcMMethOthIf Other, SpecifyNAText
2259DiagnosisDiagRdOtherDtDate of otherNADate
2260DiagnosisDiagRdOtherFindingsOther findings1 = Normal


2 = Abnormal
Drop-down list
2261DiagnosisDiagRdOtherNotesOther findings, notesNAText memo
2262DiagnosisDiagRdUnknownUnknownNABoolean
2263DiagnosisTNMoverallTNM overall grouping1 = Stage I


2 = Stage IIA


3 = Stage IIB


4 = Stage III


5 = Stage IV


6 = Not stated
Drop-down list
2264DiagnosisStagschaddAJCC Staging Scheme Edition1 = 6th edition


2 = 7th edition


3 = 8th edition


9 = Unknown
Drop-down list
2265DiagnosisCAPRACAPRA ScoreNAInteger
2266DiagnosisNCCNNCCN scoreNAInteger
2267DiagnosisNCCN_LatestNCCN (Latest)NAInteger
2268DiagnosisPRIASPRIASNAInteger
2269DiagnosisDiagISUPDiagnosis ISUP gradeNAInteger
227012 month EPIC 26EPIC26Qu11) Over the past 4weeks, how often have you leaked urine?1 = More than once a day


2 = About once a day


3 = More than once a week


4 = About once a week


5 = Rarely or never


-1 = Participant declines to answer
List of values
227112 month EPIC 26EPIC26Qu22) Which of the following best describes your urinary control during the last 4 weeks?1 = No urinary control whatsoever


2 = Frequent dribbling


3 = Occasional dribbling


4 = Total control


-1 = Participant declines to answer
List of values
227212 month EPIC 26EPIC26Qu33) How many pads or adult diapers per day did you usually use to control leakage during the last 4 weeks?1 = None


2 = 1 pad per day


3 = 2 pads per day


4 = 3 or more pads per day


-1 = Participant declines to answer
List of values
227312 month EPIC 26EPIC26Qu4AA. Dripping or leaking urine1 = No problem


2 = Very small problem


3 = Small problem


4 = Moderate problem


5 = Big problem


-1 = Participant declines to answer
List of values
227412 month EPIC 26EPIC26Qu4BB. Pain or burning on urination1 = No problem


2 = Very small problem


3 = Small problem


4 = Moderate problem


5 = Big problem


-1 = Participant declines to answer
List of values
227512 month EPIC 26EPIC26Qu4CC. Bleeding with urination1 = No problem


2 = Very small problem


3 = Small problem


4 = Moderate problem


5 = Big problem


-1 = Participant declines to answer
List of values
227612 month EPIC 26EPIC26Qu4DD. Weak urine stream or incomplete emptying1 = No problem


2 = Very small problem


3 = Small problem


4 = Moderate problem


5 = Big problem


-1 = Participant declines to answer
List of values
227712 month EPIC 26EPIC26Qu4EE. Need to urinate frequently during the day1 = No problem


2 = Very small problem


3 = Small problem


4 = Moderate problem


5 = Big problem


-1 = Participant declines to answer
List of values
227812 month EPIC 26EPIC26Qu44) How big a problem, if any, has each of the following been for you during the last 4 weeks?1 = No problem


2 = Very small problem


3 = Small problem


4 = Moderate problem


5 = Big problem


-1 = Participant declines to answer
Group of Lists
227912 month EPIC 26EPIC26Qu55) Overall, how big a problem has your urinary function been for you during the last 4 weeks?1 = No problem


2 = Very small problem


3 = Small problem


4 = Moderate problem


5 = Big problem


-1 = Participant declines to answer
List of values
228012 month EPIC 26EPIC26Qu6AA. Urgency to have a bowel movement1 = No problem


2 = Very small problem


3 = Small problem


4 = Moderate problem


5 = Big problem


-1 = Participant declines to answer
List of values
228112 month EPIC 26EPIC26Qu6BB. Increased frequency of bowel movements1 = No problem


2 = Very small problem


3 = Small problem


4 = Moderate problem


5 = Big problem


-1 = Participant declines to answer
List of values
228212 month EPIC 26EPIC26Qu6CC. Losing control of your stools1 = No problem


2 = Very small problem


3 = Small problem


4 = Moderate problem


5 = Big problem


-1 = Participant declines to answer
List of values
228312 month EPIC 26EPIC26Qu6DD. Bloody stools1 = No problem


2 = Very small problem


3 = Small problem


4 = Moderate problem


5 = Big problem


-1 = Participant declines to answer
List of values
228412 month EPIC 26EPIC26Qu6EE. Abdominal/ Pelvic/Rectal pain1 = No problem


2 = Very small problem


3 = Small problem


4 = Moderate problem


5 = Big problem


-1 = Participant declines to answer
List of values
228512 month EPIC 26v9EPIC26Qu66) How big a problem, if any, has each of the following been for you?1 = No problem


2 = Very small problem


3 = Small problem


4 = Moderate problem


5 = Big problem


-1 = Participant declines to answer
Group of Lists
228612 month EPIC 26EPIC26Qu77) Overall, how big a problem have your bowel habits been for you during the last 4 weeks?1 = No problem


2 = Very small problem


3 = Small problem


4 = Moderate problem


5 = Big problem


-1 = Participant declines to answer
List of values
228712 month EPIC 26EPIC26Qu8AA. Your ability to have an erection?1 = Very poor to none


2 = Poor


3 = Fair


4 = Good


5 = Very good


-1 = Participant declines to answer
List of values
228812 month EPIC 26EPIC26Qu8BB. Your ability to reach orgasm (climax)?1 = Very poor to none


2 = Poor


3 = Fair


4 = Good


5 = Very good


-1 = Participant declines to answer
List of values
228912 month EPIC 26EPIC26Qu88) How would you rate each of the following during the last 4 weeks?1 = Very poor to none


2 = Poor


3 = Fair


4 = Good


5 = Very good


-1 = Participant declines to answer
Group of Lists
229012 month EPIC 26EPIC26Qu99) How would you describe the usual QUALITY of your erections during the last 4 weeks?1 = None at all


2 = Not firm enough for any sexual activity


3 = Firm enough for masturbation and foreplay only


4 = Firm enough for intercourse


-1 = Participant declines to answer
List of values
229112 month EPIC 26EPIC26Qu1010) How would you describe the FREQUENCY of your erections during the last 4 weeks?1 = I NEVER had an erection when I wanted one


2 = I had an erection LESS THAN HALF the time I wanted one


3 = I had an erection ABOUT HALF the time I wanted one


4 = I had an erection MORE THAN HALF the time I wanted one


5 = I had an erection WHENEVER I wanted one


-1 = Participant declines to answer
List of values
229212 month EPIC 26EPIC26Qu1111) Overall, how would you rate your ability to function sexually during the last 4 weeks?1 = Very poor to none


2 = Poor


3 = Fair


4 = Good


5 = Very good


-1 = Participant declines to answer
List of values
229312 month EPIC 26EPIC26Qu1212) Overall, how big a problem has your sexual function or lack of sexual function been for you during the last 4 weeks?1 = No problem


2 = Very small problem


3 = Small problem


4 = Moderate problem


5 = Big problem


-1 = Participant declines to answer
List of values
229412 month EPIC 26EPIC26Qu13AA. Hot flashes1 = No problem


2 = Very small problem


3 = Small problem


4 = Moderate problem


5 = Big problem


-1 = Participant declines to answer
List of values
229512 month EPIC 26EPIC26Qu13BB. Breast tenderness/enlargement1 = No problem


2 = Very small problem


3 = Small problem


4 = Moderate problem


5 = Big problem


-1 = Participant declines to answer
List of values
229612 month EPIC 26EPIC26Qu13CC. Feeling depressed1 = No problem


2 = Very small problem


3 = Small problem


4 = Moderate problem


5 = Big problem


-1 = Participant declines to answer
List of values
229712 month EPIC 26EPIC26Qu13DD. Lack of energy1 = No problem


2 = Very small problem


3 = Small problem


4 = Moderate problem


5 = Big problem


-1 = Participant declines to answer
List of values
229812 month EPIC 26EPIC26Qu13EE. Change in body weight1 = No problem


2 = Very small problem


3 = Small problem


4 = Moderate problem


5 = Big problem


-1 = Participant declines to answer
List of values
229912 month EPIC 26EPIC26Qu1313) How big a problem during the last 4 weeks, if any, has each of the following been for you?1 = No problem


2 = Very small problem


3 = Small problem


4 = Moderate problem


5 = Big problem


-1 = Participant declines to answer
Group of Lists
230012 month EPIC 26LIBIDOQu11) During the last 4 weeks, to what extent were you interested in sex?0 = Not at all


1 = A little


2 = Quite a bit


3 = Very much


-1 = Participant declines to answer
List of values
230112 month EPIC 26LIBIDOQu22) Have you used any medications or devices to aid or improve erections?0 = No


1 = Yes


-1 = Participant declines to answer
List of values
230212 month EPIC 26LIBIDOQu3AA. Viagra or another pill to improve your erections?0 = Have not tried it


1 = Tried it but was not helpful


2 = It helped but I am not using it now


3 = It helped and I use it sometimes


4 = It helped and I use it always


-1 = Participant declines to answer
List of values
230312 month EPIC 26LIBIDOQu3BB. Muse (intra‐urethral alprostadil suppository) to improve your erections?0 = Have not tried it


1 = Tried it but was not helpful


2 = It helped but I am not using it now


3 = It helped and I use it sometimes


4 = It helped and I use it always


-1 = Participant declines to answer
List of values
230412 month EPIC 26LIBIDOQu3CC. Penile injection therapy (such as caverject) to improve your erections?0 = Have not tried it


1 = Tried it but was not helpful


2 = It helped but I am not using it now


3 = It helped and I use it sometimes


4 = It helped and I use it always


-1 = Participant declines to answer
List of values
230512 month EPIC 26LIBIDOQu3DD. Vacuum erection device (such as erect-aid) to improve your erections?0 = Have not tried it


1 = Tried it but was not helpful


2 = It helped but I am not using it now


3 = It helped and I use it sometimes


4 = It helped and I use it always


-1 = Participant declines to answer
List of values
230612 month EPIC 26LIBIDOQu3EE. Medication/device other than those explicitly listed to improve your erections?0 = Have not tried it


1 = Tried it but was not helpful


2 = It helped but I am not using it now


3 = It helped and I use it sometimes


4 = It helped and I use it always


-1 = Participant declines to answer
List of values
230712 month EPIC 26LIBIDOQu33) Please indicate whether or not you have tried or currently use:0 = Have not tried it


1 = Tried it but was not helpful


2 = It helped but I am not using it now


3 = It helped and I use it sometimes


4 = It helped and I use it always


-1 = Participant declines to answer
Group of Lists
230812 month EPIC 26ConYNAre you happy to be contacted again in 12 months?1 = Yes


2 = No


-1 = Unknown
Drop-down list
230912 month EPIC 26EPICSurveyModeSurvey Mode1 = Phone


2 = Email


3 = Mail


4 = Site
List of values
231012 month EPIC 26ReceivedOnMail received onNADate
231112 month EPIC 26DtEPICCompleteEPIC-26 completion dateNADate
2312Focal-gland ablation therapyFoGlYNFocal-gland ablation therapy0 = No


1 = Yes


2 = Pending


9 = Not known
Drop-down list
2313Focal-gland ablation therapyFoGlPrimSalPrimary or salvage1 = Primary


2 = Salvage
Drop-down list
2314Focal-gland ablation therapyFoGlDtDate of focal-gland ablation therapyNADate
2315Focal-gland ablation therapyFoGlPSAStatusPSA Status1 = Taken


2 = Not taken
Drop-down list
2316Focal-gland ablation therapyFoGlPSAPSA levelNADrop-down list
2317Focal-gland ablation therapyFoGlClinClinicianNASearch list
2318Focal-gland ablation therapyFoGlInstTreatment InstituteNADrop-down list
2319Focal-gland ablation therapyFoGlClinicalTrialIs participant enrolled in a Clinical Trial?1 = Yes


0 = No


-1 = Not stated
Drop-down list
2320Focal-gland ablation therapyFoGlTrialNumberTrial NumberNAText
2321Focal-gland ablation therapyComplicationYNPatient experienced a CTCAE grade 3 or 4 complication during treatment0 = No


1 = Yes
List of values
2322Focal-gland ablation therapyFatigueFatigue0 = No


1 = Grade 3


2 = Grade 4
Drop-down list
2323Focal-gland ablation therapyDermatitisDermatitis0 = No


1 = Grade 3


2 = Grade 4
Drop-down list
2324Focal-gland ablation therapyDiarrhoeaDiarrhoea0 = No


1 = Grade 3


2 = Grade 4
Drop-down list
2325Focal-gland ablation therapyAbdominalPainAbdominal Pain0 = No


1 = Grade 3


2 = Grade 4
Drop-down list
2326Focal-gland ablation therapyRectalMucositisRectal Mucositis0 = No


1 = Grade 3


2 = Grade 4
Drop-down list
2327Focal-gland ablation therapyProctitisProctitis0 = No


1 = Grade 3


2 = Grade 4
Drop-down list
2328Focal-gland ablation therapyHotFlashesHot Flashes0 = No


1 = Grade 3


2 = Grade 4
Drop-down list
2329Focal-gland ablation therapyCystitisNonInfectiveCystitis Non-Infective0 = No


1 = Grade 3


2 = Grade 4
Drop-down list
2330Focal-gland ablation therapyUrinaryRetentionUrinary Retention0 = No


1 = Grade 3


2 = Grade 4
Drop-down list
2331Focal-gland ablation therapyOtherChkOther domain, specifyNABoolean
2332Focal-gland ablation therapyOtherOther domain, specify (Text)NAText
2333Focal-gland ablation therapyOtherGradeOther domain, specify (Grade)0 = No


1 = Grade 3


2 = Grade 4
Drop-down list
2334Focal-gland ablation therapyComplicationsTablePlease specify complications domains and gradeNATable of items
2335Additional focal therapyFoGlAddStartDtDateNADate
2336Additional focal therapyFoGlAddStartDtAccDate Accuracy1 = AAA


2 = AAE


3 = AAU


4 = AEE


5 = AEU


6 = AUU


7 = AUA


8 = AUE


9 = AEA


10 = EAA


11 = EAE


12 = EAU


13 = EEA


14 = EEE


15 = EEU


16 = EUA


17 = EUE


18 = EUU


19 = UAA


20 = UAE


21 = UAU


22 = UEA


23 = UEE


24 = UEU


25 = UUA


26 = UUE


27 = UUU
Drop-down list
2337Additional focal therapyFoGlAddPSAStatusPSA Status1 = Taken


2 = Not taken
Drop-down list
2338Additional focal therapyFoGlAddPSAPSA LevelNADrop-down list
2339Additional focal therapyFoGlAddClinClinicianNASearch list
2340Additional focal therapyFoGlAddInstTreatment InstituteNADrop-down list
2341Follow-upLtfuYNLost to Follow Up0 = No


1 = Yes
Drop-down list
2342Follow-upLtfuReasReason for Lost to Follow Up1 = Patient deceased


2 = Patient unwell


3 = Non-english speaking


4 = Unable to contact


5 = Patient not interested in participating (remove data completely from the registry)


6 = Patient diagnosed earlier than denoted in this notification


7 = Late notification


8 = Patient diagnosed in another hospital at an earlier time


9 = Waiver for TURP


10 = Waiver for death


11 = Patient not interested in participating (Consent for data collection only)


12 = Dr not recruited at time of follow up


13 = Hearing impairment


14 = Late notification of TURP awareness


15 = Wrong/disconnected number


16 = Other (please state)


17 = Delayed data collection


18 = PROMS not returned


19 = Being followed up by another jurisdiction


20 = Delayed data collection due to covid-19
Drop-down list
2343Follow-upLtfuOthOther ReasonNAText
2344Follow-upDtFollowupCompleteDate of Follow UpNADate
2410MRI Sub-formMRIDtMRI DateNADate
2411MRI Sub-formPIRADSPI-RADS1 = 1


2 = 2


3 = 3


4 = 4


5 = 5


-1 = Not Stated
Drop-down list
2412MRI Sub-formlengthLength (cm)NAReal
2413MRI Sub-formwidthWidth (cm)NAReal
2414MRI Sub-formheightHeight (cm)NAReal
2415MRI Sub-formvolumeVolume (ml)NAReal
2450Other Systemic TherapiesOthSyThYNOther systemic therapies0 = No


1 = Yes


2 = Pending


9 = Not known
Drop-down list
2451Other Systemic TherapiesOthSyThStartDtStart date of Other Systemic TherapiesNADate
2452Other Systemic TherapiesOthSyThEndDtEnd date of Other Systemic TherapiesNADate
2453Other Systemic TherapiesOthSysStopReasonReason for stopping treatment1 = Planned (completion)


2 = Unplanned (toxicity)


3 = Unplanned (progression)


4 = Other
Drop-down list
2454Other Systemic TherapiesOthSysStopNotesReason for stopping treatment notesNAText
2455Other Systemic TherapiesNotesNotesNAText memo
2456Other Systemic TherapiesComplicationYNPatient experienced a CTCAE grade 3 or 4 complication during treatment0 = No


1 = Yes
List of values
2457Other Systemic TherapiesFatigueFatigue0 = No


1 = Grade 3


2 = Grade 4
Drop-down list
2458Other Systemic TherapiesDermatitisDermatitis0 = No


1 = Grade 3


2 = Grade 4
Drop-down list
2459Other Systemic TherapiesDiarrhoeaDiarrhoea0 = No


1 = Grade 3


2 = Grade 4
Drop-down list
2460Other Systemic TherapiesAbdominalPainAbdominal Pain0 = No


1 = Grade 3


2 = Grade 4
Drop-down list
2461Other Systemic TherapiesRectalMucositisRectal Mucositis0 = No


1 = Grade 3


2 = Grade 4
Drop-down list
2462Other Systemic TherapiesProctitisProctitis0 = No


1 = Grade 3


2 = Grade 4
Drop-down list
2463Other Systemic TherapiesHotFlashesHot Flashes0 = No


1 = Grade 3


2 = Grade 4
Drop-down list
2464Other Systemic TherapiesCystitisNonInfectiveCystitis Non-Infective0 = No


1 = Grade 3


2 = Grade 4
Drop-down list
2465Other Systemic TherapiesUrinaryRetentionUrinary Retention0 = No


1 = Grade 3


2 = Grade 4
Drop-down list
2466Other Systemic TherapiesOtherChkOther domain, specifyNABoolean
2467Other Systemic TherapiesOtherOther domain, specify (Text)NAText
2468Other Systemic TherapiesOtherGradeOther domain, specify (Grade)0 = No


1 = Grade 3


2 = Grade 4
Drop-down list
2469Other Systemic TherapiesComplicationsTablePlease specify complications domains and gradeNATable of items
2470Other/Unknown/Referred TreatmentOthPrimSalType1 = Primary


2 = Salvage
Drop-down list
2471Other/Unknown/Referred TreatmentOthYNOther treatment0 = No


1 = Yes


2 = Pending


9 = Not known
Drop-down list
2472Other/Unknown/Referred TreatmentOthDtStart DateNADate
2473Other/Unknown/Referred TreatmentOthStopDtStop DateNADate
2474Other/Unknown/Referred TreatmentOthStopReasonReason for stopping treatment1 = Planned (completion)


2 = Unplanned (toxicity)


3 = Unplanned (progression)


4 = Other
Drop-down list
2475Other/Unknown/Referred TreatmentOthStopNotesReason for stopping treatment notesNAText
2476Other/Unknown/Referred TreatmentOthPSAStatusPSA Status1 = Taken


2 = Not taken
Drop-down list
2477Other/Unknown/Referred TreatmentOthPsaNANADrop-down list
2478Other/Unknown/Referred TreatmentOthTypeOther treatment typeNAText
2479Other/Unknown/Referred TreatmentOthClinClinicianNASearch list
2480Other/Unknown/Referred TreatmentOthInstTreatment InstituteNADrop-down list
2481Other/Unknown/Referred TreatmentUnkYNUnknown Treatment0 = No


1 = Yes
List of values
2482Other/Unknown/Referred TreatmentUnkNoteTreatment noteNAText memo
2483Other/Unknown/Referred TreatmentUnkRefYNReferred treatment0 = No


1 = Yes
List of values
2484Other/Unknown/Referred TreatmentUnkRefClinReferred ClinicianNASearch list
2485Other/Unknown/Referred TreatmentUnkRefInstTreatment InstituteNADrop-down list
2486PSA Sub-formPSAdatPSA DateNADate
2487PSA Sub-formPSALevPSA LevelNAReal
2488RadiotherapyRtYNRadiotherapy0 = No


1 = Yes


2 = Pending


9 = Not known
Drop-down list
2489RadiotherapyRtPrimSalPalTreatment intent1 = Primary


2 = Salvage


3 = Palliative
Drop-down list
2490RadiotherapyRtTypeType of Radiation1 = EBRT


2 = Brachytherapy
Drop-down list
2491RadiotherapyRtNodesTargetedWere elective nodes targeted in EBRT?1 = Yes


0 = No


-1 = Not stated
Drop-down list
2492RadiotherapyLdrYNLDR Brachytherapy0 = No


1 = Yes
Drop-down list
2493RadiotherapyHdrYNHDR Brachytherapy0 = No


1 = Yes
Drop-down list
2494RadiotherapyRtDtStart date of RadiotherapyNADate
2495RadiotherapyRtStopDtStop date of RadiotherapyNADate
2496RadiotherapyRtStopReasonReason for stopping treatment1 = Planned (completion)


2 = Unplanned (toxicity)


3 = Unplanned (progression)


4 = Other
Drop-down list
2497RadiotherapyRtStopReasonNotesReason for stopping treatment notesNAText
2498RadiotherapyRtDoseTotal dose (Gy)NAReal
2499RadiotherapyRtDoseKnownUnknownNABoolean
2500RadiotherapyRtFracNumber of FractionsNAInteger
2501RadiotherapyRtFracKnownUnknownNABoolean
2502RadiotherapyRtPSAStatusPSA Status1 = Taken


2 = Not taken
Drop-down list
2503RadiotherapyRtPSAPSA levelNADrop-down list
2504RadiotherapyRtClinRadiation OncologistNASearch list
2505RadiotherapyRtInstTreatment InstituteNADrop-down list
2506RadiotherapyRtClinicalTrialIs participant enrolled in a Clinical Trial?1 = Yes


0 = No


-1 = Not stated
Drop-down list
2507RadiotherapyRtTrialNumberTrial NumberNAText
2508RadiotherapyComplicationYNPatient experienced a CTCAE grade 3 or 4 complication during treatment0 = No


1 = Yes
List of values
2509RadiotherapyFatigueFatigue0 = No


1 = Grade 3


2 = Grade 4
Drop-down list
2510RadiotherapyDermatitisDermatitis0 = No


1 = Grade 3


2 = Grade 4
Drop-down list
2511RadiotherapyDiarrhoeaDiarrhoea0 = No


1 = Grade 3


2 = Grade 4
Drop-down list
2512RadiotherapyAbdominalPainAbdominal Pain0 = No


1 = Grade 3


2 = Grade 4
Drop-down list
2513RadiotherapyRectalMucositisRectal Mucositis0 = No


1 = Grade 3


2 = Grade 4
Drop-down list
2514RadiotherapyProctitisProctitis0 = No


1 = Grade 3


2 = Grade 4
Drop-down list
2515RadiotherapyHotFlashesHot Flashes0 = No


1 = Grade 3


2 = Grade 4
Drop-down list
2516RadiotherapyCystitisNonInfectiveCystitis Non-Infective0 = No


1 = Grade 3


2 = Grade 4
Drop-down list
2517RadiotherapyUrinaryRetentionUrinary Retention0 = No


1 = Grade 3


2 = Grade 4
Drop-down list
2518RadiotherapyOtherChkOther domain, specifyNABoolean
2519RadiotherapyOtherOther domain, specify (Text)NAText
2520RadiotherapyOtherGradeOther domain, specify (Grade)0 = No


1 = Grade 3


2 = Grade 4
Drop-down list
2521RadiotherapyComplicationsTablePlease specify complications domains and gradeNATable of items
2522SurgerySurYNProstatectomy0 = No


1 = Yes


2 = Pending


9 = Not known
Drop-down list
2523SurgerySurPrimSalType1 = Primary


2 = Salvage
Drop-down list
2524SurgerySurDtDate of surgeryNADate
2525SurgerySurPSAStatusPSA Status1 = Taken


2 = Not taken
Drop-down list
2526SurgerySurPSAPSA levelNADrop-down list
2527SurgerySurTypeSurgical Approach6065 = Open prostatectomy


6069 = Laproscopic prostatectomy


3 = Robot assisted laparoscopic prostatectomy


4 = Open (converted from laproscopic)


5 = Open (converted from robotic)


7 = Other prostatectomy
Drop-down list
2528SurgerySurOthSurgery (Other)NAText
2529SurgerySurNerveSpareNerve Sparing Status1 = Non-nerve-sparing


2 = Nerve-sparing


-1 = Unknown
Drop-down list
2530SurgerySurClinSurgeonNASearch list
2531SurgerySurInstTreatment InstituteNADrop-down list
2532SurgerySurHistTypeHistology Type 11 = 8140/3 = Adenocarcinoma


2 = 8480/3 = Mucinous (colloid)


3 = 8490/3 = Signet ring-like cell


6 = 8500/3 = Ductal adenocarcinoma


7 = 8120/3 = Urothelial carcinoma


8 = 8560/3 = Adenosquamous carcinoma


9 = 8070/3 = Squamous cell carcinoma


11 = 8147/3 = Basal cell carcinoma


12 = 8574/3 = Adenocarcinoma with neuroendocrine differentiation


13 = 8240/3 = Well differentiated neuroendocrine tumour


14 = 8041/3 = Small-cell neuroendocrine carcinoma


20 = 8572/3 = Sarcomatoid


21 = 8500/2 = Intraductal carcinoma


99 = Other


100 = Unknown
Drop-down list
2533SurgeryOtherHistoTypeCodeHistology Type OtherNAText
2534SurgerySurHistType2Histology Type 21 = 8140/3 = Adenocarcinoma


2 = 8480/3 = Mucinous (colloid)


3 = 8490/3 = Signet ring-like cell


6 = 8500/3 = Ductal adenocarcinoma


7 = 8120/3 = Urothelial carcinoma


8 = 8560/3 = Adenosquamous carcinoma


9 = 8070/3 = Squamous cell carcinoma


11 = 8147/3 = Basal cell carcinoma


12 = 8574/3 = Adenocarcinoma with neuroendocrine differentiation


13 = 8240/3 = Well differentiated neuroendocrine tumour


14 = 8041/3 = Small-cell neuroendocrine carcinoma


20 = 8572/3 = Sarcomatoid


21 = 8500/2 = Intraductal carcinoma


99 = Other


100 = Unknown
Drop-down list
2535SurgeryOtherHistoTypeCode2Histology Type 2 OtherNAText
2536SurgerySurHistType3Histology Type 31 = 8140/3 = Adenocarcinoma


2 = 8480/3 = Mucinous (colloid)


3 = 8490/3 = Signet ring-like cell


6 = 8500/3 = Ductal adenocarcinoma


7 = 8120/3 = Urothelial carcinoma


8 = 8560/3 = Adenosquamous carcinoma


9 = 8070/3 = Squamous cell carcinoma


11 = 8147/3 = Basal cell carcinoma


12 = 8574/3 = Adenocarcinoma with neuroendocrine differentiation


13 = 8240/3 = Well differentiated neuroendocrine tumour


14 = 8041/3 = Small-cell neuroendocrine carcinoma


20 = 8572/3 = Sarcomatoid


21 = 8500/2 = Intraductal carcinoma


99 = Other


100 = Unknown
Drop-down list
2537SurgeryOtherHistoTypeCode3Histology Type 3 OtherNAText
2538SurgerySurTumourPresYNPresence of Tumour?0 = No


1 = Yes


9 = Not Known
Drop-down list
2539SurgerySurTT stage1 = TX (not assessed)


2 = T0


7 = T2


8 = T2a


9 = T2b


10 = T2c


11 = T3


12 = T3a


13 = T3b


14 = T4


15 = T4a


16 = T4b
Drop-down list
2540SurgerySurNN stage0 = N0


1 = N1


2 = NX (nodes not biopsied)
Drop-down list
2541SurgerySurGle1Gleason Score1 = 1


2 = 2


3 = 3


4 = 4


5 = 5


-1 = Not stated


-2 = No pathology report


-3 = Insufficient sample
Drop-down list
2542SurgerySurGle2+1 = 1


2 = 2


3 = 3


4 = 4


5 = 5


-1 = Not stated


-2 = No pathology report


-3 = Insufficient sample
Drop-down list
2543SurgerySurGleSum=NAInteger
2544SurgeryCribriformPatternPresentCribriform Morphology Pattern Present1 = Yes


0 = No


-1 = Not stated
Drop-down list
2545SurgeryPatternPercentPercentage of Pattern 41 = < 5%


2 = 10%


3 = 20%


4 = 30%


5 = 50%


6 = > 50%


7 = 100%


8 = Other
Drop-down list
2546SurgeryPatternPercentOtherPercentage of Pattern 4, otherNAInteger
2547SurgerySurTerTertiary score1 = 1


2 = 2


3 = 3


4 = 4


5 = 5


-1 = Not stated


-2 = No pathology report


-3 = Insufficient sample
Drop-down list
2548SurgerySurMarPathological Margins1 = Present (positive)


2 = Absent (negative)


-1 = Not stated
Drop-down list
2549SurgerySurFocalMargin status focality1 = Focal


2 = Multi-focal


-1 = Unknown
Drop-down list
2550SurgerySurFocExtFocal/Extensive Margins1 = <= 1mm (focal)


2 = > 1mm (extensive)


-1 = Not stated/unknown


-2 = No pathology report
Drop-down list
2551SurgerySurPInvPerineural Invasion0 = No


1 = Yes


-1 = Not stated


-2 = No pathology report
Drop-down list
2552SurgerySurLInvLymphovascular Invasion2 = Artery


3 = Vein


4 = Lymph


5 = Multiple vessel types


1 = Vessel not known


0 = No


-2 = No pathology report


-1 = Not stated
Drop-down list
2553SurgerySurEPInvExtraprostatic Invasion0 = No


1 = Yes


-1 = Not stated


-2 = No pathology report
Drop-down list
2554SurgerySurSVInvSeminal Vesicle Invasion0 = No


1 = Yes


-1 = Not stated


-2 = No pathology report
Drop-down list
2555SurgeryTNMgroupTNM grouping1 = Stage I


2 = Stage IIA


3 = Stage IIB


4 = Stage III


5 = Stage IV


6 = Not stated
Drop-down list
2556SurgeryStagschemeEdAJCC Staging scheme Edition1 = 6th edition


2 = 7th edition


3 = 8th edition


9 = Unknown
Drop-down list
2557SurgeryPelvicLymphDonePelvic lymph node dissection done1 = Yes


0 = No


-1 = Not stated
Drop-down list
2558SurgeryPelvicLymphRemNumber of nodes removedNAInteger
2559SurgeryPelvicLymphPosNumber of nodes positive for cancerNAInteger
2560SurgerySurClinicalTrialIs participant enrolled in a Clinical Trial?1 = Yes


0 = No


-1 = Not stated
Drop-down list
2561SurgerySurTrialNumberTrial numberNAText
2562SurgeryClavienPatient experienced a Clavien grade III-V complication (maximum grade)0 = No


1 = Grade 3


2 = Grade 4


3 = Grade 5
Drop-down list
2563Surgerytable-ectomyYNNANATable of items
2564Baseline surveyeortc3131. Have you had to urinate frequently during the day?1 = Not at all


2 = A little


3 = Quite a bit


4 = Very much


-1 = Participant declines to answer
List of values
2565Baseline surveyeortc3232. Have you had to urinate frequently at night?1 = Not at all


2 = A little


3 = Quite a bit


4 = Very much


-1 = Participant declines to answer
List of values
2566Baseline surveyeortc3333. When you felt the urge to pass urine, did you have to hurry to get to the toilet?1 = Not at all


2 = A little


3 = Quite a bit


4 = Very much


-1 = Participant declines to answer
List of values
2567Baseline surveyeortc3434. Was it difficult for you to get enough sleep, because you needed to get up frequently at night to urinate?1 = Not at all


2 = A little


3 = Quite a bit


4 = Very much


-1 = Participant declines to answer
List of values
2568Baseline surveyeortc3535. Have you had difficulty going out of the house because you needed to be close to a toilet?1 = Not at all


2 = A little


3 = Quite a bit


4 = Very much


-1 = Participant declines to answer
List of values
2569Baseline surveyeortc_pr25_group1During the past week: (Please select one on each line)1 = Not at all


2 = A little


3 = Quite a bit


4 = Very much


-1 = Participant declines to answer
Group of Lists
2570Baseline surveyeortc3636. Have you had any unintentional release (leakage) of urine?1 = Not at all


2 = A little


3 = Quite a bit


4 = Very much


-1 = Participant declines to answer
List of values
2571Baseline surveyeortc3737. Did you have pain when you urinated?1 = Not at all


2 = A little


3 = Quite a bit


4 = Very much


-1 = Participant declines to answer
List of values
2572Baseline surveyeortc3838. Answer this question only if you wear an incontinence aid: Has wearing an incontinence aid been a problem for you?1 = Not at all


2 = A little


3 = Quite a bit


4 = Very much


-1 = Participant declines to answer
List of values
2573Baseline surveyeortc3939. Have your daily activities been limited by your urinary problems?1 = Not at all


2 = A little


3 = Quite a bit


4 = Very much


-1 = Participant declines to answer
List of values
2574Baseline surveyeortc4040. Have your daily activities been limited by your bowel problems?1 = Not at all


2 = A little


3 = Quite a bit


4 = Very much


-1 = Participant declines to answer
List of values
2575Baseline surveyeortc4141. Have you had any unintentional release (leakage) of stools?1 = Not at all


2 = A little


3 = Quite a bit


4 = Very much


-1 = Participant declines to answer
List of values
2576Baseline surveyeortc4242. Have you had blood in your stools?1 = Not at all


2 = A little


3 = Quite a bit


4 = Very much


-1 = Participant declines to answer
List of values
2577Baseline surveyeortc4343. Did you have a bloated feeling in your abdomen?1 = Not at all


2 = A little


3 = Quite a bit


4 = Very much


-1 = Participant declines to answer
List of values
2578Baseline surveyeortc4444. Did you have hot flushes?1 = Not at all


2 = A little


3 = Quite a bit


4 = Very much


-1 = Participant declines to answer
List of values
2579Baseline surveyeortc4545. Have you had sore or enlarged nipples or breasts?1 = Not at all


2 = A little


3 = Quite a bit


4 = Very much


-1 = Participant declines to answer
List of values
2580Baseline surveyeortc4646. Have you had swelling in your legs or ankles?1 = Not at all


2 = A little


3 = Quite a bit


4 = Very much


-1 = Participant declines to answer
List of values
2581Baseline surveyeortc11. Do you have any trouble doing strenuous activities, like carrying a heavy shopping bag or suitcase?1 = Not at all


2 = A little


3 = Quite a bit


4 = Very much


-1 = Participant declines to answer
List of values
2582Baseline surveyeortc4747. Has weight loss been a problem for you?1 = Not at all


2 = A little


3 = Quite a bit


4 = Very much


-1 = Participant declines to answer
List of values
2583Baseline surveyeortc4848. Has weight gain been a problem for you?1 = Not at all


2 = A little


3 = Quite a bit


4 = Very much


-1 = Participant declines to answer
List of values
2584Baseline surveyeortc22. Do you have any trouble taking a long walk?1 = Not at all


2 = A little


3 = Quite a bit


4 = Very much


-1 = Participant declines to answer
List of values
2585Baseline surveyeortc33. Do you have any trouble taking a short walk outside of the house?1 = Not at all


2 = A little


3 = Quite a bit


4 = Very much


-1 = Participant declines to answer
List of values
2586Baseline surveyeortc4949. Have you felt less masculine as a result of your illness or treatment?1 = Not at all


2 = A little


3 = Quite a bit


4 = Very much


-1 = Participant declines to answer
List of values
2587Baseline surveyeortc5050. To what extent were you interested in sex?1 = Not at all


2 = A little


3 = Quite a bit


4 = Very much


-1 = Participant declines to answer
List of values
2588Baseline surveyeortc44. Do you need to stay in bed or a chair during the day?1 = Not at all


2 = A little


3 = Quite a bit


4 = Very much


-1 = Participant declines to answer
List of values
2589Baseline surveyeortc55. Do you need help with eating, dressing, washing yourself or using the toilet?1 = Not at all


2 = A little


3 = Quite a bit


4 = Very much


-1 = Participant declines to answer
List of values
2590Baseline surveyeortc5151. To what extent were you sexually active (with or without intercourse)?1 = Not at all


2 = A little


3 = Quite a bit


4 = Very much


-1 = Participant declines to answer
List of values
2591Baseline surveyeortc_pr25_group2During the past 4 weeks: (Please select one on each line)1 = Not at all


2 = A little


3 = Quite a bit


4 = Very much


-1 = Participant declines to answer
Group of Lists
2592Baseline surveyeortc_c30_group1Please tell us more about your quality of life in general1 = Not at all


2 = A little


3 = Quite a bit


4 = Very much


-1 = Participant declines to answer
Group of Lists
2593Baseline surveyeortc5252. To what extent was sex enjoyable for you?1 = Not at all


2 = A little


3 = Quite a bit


4 = Very much


-1 = Participant declines to answer
List of values
2594Baseline surveyeortc66. Were you limited in doing either your work or other daily activities?1 = Not at all


2 = A little


3 = Quite a bit


4 = Very much


-1 = Participant declines to answer
List of values
2595Baseline surveyeortc77. Were you limited in pursuing your hobbies or other leisure time activities?1 = Not at all


2 = A little


3 = Quite a bit


4 = Very much


-1 = Participant declines to answer
List of values
2596Baseline surveyeortc5353. Did you have difficulty getting or maintaining an erection?1 = Not at all


2 = A little


3 = Quite a bit


4 = Very much


-1 = Participant declines to answer
List of values
2597Baseline surveyeortc5454. Did you have ejaculation problems (eg dry ejaculation)?1 = Not at all


2 = A little


3 = Quite a bit


4 = Very much


-1 = Participant declines to answer
List of values
2598Baseline surveyeortc88. Were you short of breath?1 = Not at all


2 = A little


3 = Quite a bit


4 = Very much


-1 = Participant declines to answer
List of values
2599Baseline surveyeortc99. Have you had pain?1 = Not at all


2 = A little


3 = Quite a bit


4 = Very much


-1 = Participant declines to answer
List of values
2600Baseline surveyeortc5555. Have you felt uncomfortable about being sexually intimate?1 = Not at all


2 = A little


3 = Quite a bit


4 = Very much


-1 = Participant declines to answer
List of values
2601Baseline surveyeortc1010. Did you need to rest?1 = Not at all


2 = A little


3 = Quite a bit


4 = Very much


-1 = Participant declines to answer
List of values
2602Baseline surveyeortc1111. Have you had trouble sleeping?1 = Not at all


2 = A little


3 = Quite a bit


4 = Very much


-1 = Participant declines to answer
List of values
2603Baseline surveyeortc1212. Have you felt weak?1 = Not at all


2 = A little


3 = Quite a bit


4 = Very much


-1 = Participant declines to answer
List of values
2604Baseline surveyeortc_c30_group2During the past week:1 = Not at all


2 = A little


3 = Quite a bit


4 = Very much


-1 = Participant declines to answer
Group of Lists
2605Baseline surveyeortc_pr25_group3Please answer the next four questions only if you have been sexually active over the last 4 weeks: (Please tick one box on each line)1 = Not at all


2 = A little


3 = Quite a bit


4 = Very much


-1 = Participant declines to answer
Group of Lists
2606Baseline surveyeortc1313. Have you lacked appetite?1 = Not at all


2 = A little


3 = Quite a bit


4 = Very much


-1 = Participant declines to answer
List of values
2607Baseline surveyeortc1414. Have you felt nauseated?1 = Not at all


2 = A little


3 = Quite a bit


4 = Very much


-1 = Participant declines to answer
List of values
2608Baseline surveyeortc1515. Have you vomited?1 = Not at all


2 = A little


3 = Quite a bit


4 = Very much


-1 = Participant declines to answer
List of values
2609Baseline surveyeortc1616. Have you been constipated?1 = Not at all


2 = A little


3 = Quite a bit


4 = Very much


-1 = Participant declines to answer
List of values
2610Baseline surveyeortc1717. Have you had diarrhoea?1 = Not at all


2 = A little


3 = Quite a bit


4 = Very much


-1 = Participant declines to answer
List of values
2611Baseline surveyeortc1818. Were you tired?1 = Not at all


2 = A little


3 = Quite a bit


4 = Very much


-1 = Participant declines to answer
List of values
2612Baseline surveyeortc1919. Did pain interfere with your daily activities?1 = Not at all


2 = A little


3 = Quite a bit


4 = Very much


-1 = Participant declines to answer
List of values
2613Baseline surveyeortc2020. Have you had difficulty in concentrating on things like reading a newspaper or watching television?1 = Not at all


2 = A little


3 = Quite a bit


4 = Very much


-1 = Participant declines to answer
List of values
2614Baseline surveyeortc2121. Did you feel tense?1 = Not at all


2 = A little


3 = Quite a bit


4 = Very much


-1 = Participant declines to answer
List of values
2615Baseline surveyeortc2222. Did you worry?1 = Not at all


2 = A little


3 = Quite a bit


4 = Very much


-1 = Participant declines to answer
List of values
2616Baseline surveyeortc2323. Did you feel irritable?1 = Not at all


2 = A little


3 = Quite a bit


4 = Very much


-1 = Participant declines to answer
List of values
2617Baseline surveyeortc2424. Did you feel depressed?1 = Not at all


2 = A little


3 = Quite a bit


4 = Very much


-1 = Participant declines to answer
List of values
2618Baseline surveyeortc2525. Have you had difficulty remembering things?1 = Not at all


2 = A little


3 = Quite a bit


4 = Very much


-1 = Participant declines to answer
List of values
2619Baseline surveyeortc2626. Has your physical condition or medical treatment interfered with your family life?1 = Not at all


2 = A little


3 = Quite a bit


4 = Very much


-1 = Participant declines to answer
List of values
2620Baseline surveyeortc2727. Has your physical condition or medical treatment interfered with your social activities?1 = Not at all


2 = A little


3 = Quite a bit


4 = Very much


-1 = Participant declines to answer
List of values
2621Baseline surveyeortc2828. Has your physical condition or medical treatment caused your financial difficulties?1 = Not at all


2 = A little


3 = Quite a bit


4 = Very much


-1 = Participant declines to answer
List of values
2622Baseline surveyeortc2929. How would you rate your overall health during the past week?1 = 1 (Very poor)


2 = 2


3 = 3


4 = 4


5 = 5


6 = 6


7 = 7 (Excellent)


-1 = Participant declines to answer
List of values
2623Baseline surveyeortc3030. How would you rate your overall quality of life during the past week?1 = 1 (Very poor)


2 = 2


3 = 3


4 = 4


5 = 5


6 = 6


7 = 7 (Excellent)


-1 = Participant declines to answer
List of values
2624Baseline surveyEPIC26Qu11. Over the past 4 weeks, how often have you leaked urine?1 = More than once a day


2 = About once a day


3 = More than once a week


4 = About once a week


5 = Rarely or never


-1 = Participant declines to answer
List of values
2625Baseline surveyEPIC26Qu22. Which of the following best describes your urinary control during the last 4 weeks?1 = No urinary control whatsoever


2 = Frequent dribbling


3 = Occasional dribbling


4 = Total control


-1 = Participant declines to answer
List of values
2626Baseline surveyEPIC26Qu33. How many pads or adult diapers per day did you usually use to control leakage during the last 4 weeks?1 = None


2 = 1 pad per day


3 = 2 pads per day


4 = 3 or more pads per day


-1 = Participant declines to answer
List of values
2627Baseline surveyEPIC26Qu4AA. Dripping or leaking urine1 = No problem


2 = Very small problem


3 = Small problem


4 = Moderate problem


5 = Big problem


-1 = Participant declines to answer
List of values
2628Baseline surveyEPIC26Qu4BB. Pain or burning on urination1 = No problem


2 = Very small problem


3 = Small problem


4 = Moderate problem


5 = Big problem


-1 = Participant declines to answer
List of values
2629Baseline surveyEPIC26Qu4CC. Bleeding with urination1 = No problem


2 = Very small problem


3 = Small problem


4 = Moderate problem


5 = Big problem


-1 = Participant declines to answer
List of values
2630Baseline surveyEPIC26Qu4DD. Weak urine stream or incomplete emptying1 = No problem


2 = Very small problem


3 = Small problem


4 = Moderate problem


5 = Big problem


-1 = Participant declines to answer
List of values
2631Baseline surveyEPIC26Qu4EE. Need to urinate frequently during the day1 = No problem


2 = Very small problem


3 = Small problem


4 = Moderate problem


5 = Big problem


-1 = Participant declines to answer
List of values
2632Baseline surveyEPIC26Qu44. How big a problem, if any, has each of the following been for you during the last 4 weeks?1 = No problem


2 = Very small problem


3 = Small problem


4 = Moderate problem


5 = Big problem


-1 = Participant declines to answer
Group of Lists
2633Baseline surveyEPIC26Qu55. Overall, how big a problem has your urinary function been for you during the last 4 weeks?1 = No problem


2 = Very small problem


3 = Small problem


4 = Moderate problem


5 = Big problem


-1 = Participant declines to answer
List of values
2634Baseline surveyEPIC26Qu6AA. Urgency to have a bowel movement1 = No problem


2 = Very small problem


3 = Small problem


4 = Moderate problem


5 = Big problem


-1 = Participant declines to answer
List of values
2635Baseline surveyEPIC26Qu6BB. Increased frequency of bowel movements1 = No problem


2 = Very small problem


3 = Small problem


4 = Moderate problem


5 = Big problem


-1 = Participant declines to answer
List of values
2636Baseline surveyEPIC26Qu6CC. Losing control of your stools1 = No problem


2 = Very small problem


3 = Small problem


4 = Moderate problem


5 = Big problem


-1 = Participant declines to answer
List of values
2637Baseline surveyEPIC26Qu6DD. Bloody stools1 = No problem


2 = Very small problem


3 = Small problem


4 = Moderate problem


5 = Big problem


-1 = Participant declines to answer
List of values
2638Baseline surveyEPIC26Qu6EE. Abdominal/ Pelvic/Rectal pain1 = No problem


2 = Very small problem


3 = Small problem


4 = Moderate problem


5 = Big problem


-1 = Participant declines to answer
List of values
2639Baseline surveyv9EPIC26Qu66. How big a problem, if any, has each of the following been for you?1 = No problem


2 = Very small problem


3 = Small problem


4 = Moderate problem


5 = Big problem


-1 = Participant declines to answer
Group of Lists
2640Baseline surveyEPIC26Qu77. Overall, how big a problem have your bowel habits been for you during the last 4 weeks?1 = No problem


2 = Very small problem


3 = Small problem


4 = Moderate problem


5 = Big problem


-1 = Participant declines to answer
List of values
2641Baseline surveyEPIC26Qu8AA. Your ability to have an erection?1 = Very poor to none


2 = Poor


3 = Fair


4 = Good


5 = Very good


-1 = Participant declines to answer
List of values
2642Baseline surveyEPIC26Qu8BB. Your ability to reach orgasm (climax)?1 = Very poor to none


2 = Poor


3 = Fair


4 = Good


5 = Very good


-1 = Participant declines to answer
List of values
2643Baseline surveyEPIC26Qu88. How would you rate each of the following during the last 4 weeks?1 = Very poor to none


2 = Poor


3 = Fair


4 = Good


5 = Very good


-1 = Participant declines to answer
Group of Lists
2644Baseline surveyEPIC26Qu99. How would you describe the usual QUALITY of your erections during the last 4 weeks?1 = None at all


2 = Not firm enough for any sexual activity


3 = Firm enough for masturbation and foreplay only


4 = Firm enough for intercourse


-1 = Participant declines to answer
List of values
2645Baseline surveyEPIC26Qu1010. How would you describe the FREQUENCY of your erections during the last 4 weeks?1 = I NEVER had an erection when I wanted one


2 = I had an erection LESS THAN HALF the time I wanted one


3 = I had an erection ABOUT HALF the time I wanted one


4 = I had an erection MORE THAN HALF the time I wanted one


5 = I had an erection WHENEVER I wanted one


-1 = Participant declines to answer
List of values
2646Baseline surveyEPIC26Qu1111. Overall, how would you rate your ability to function sexually during the last 4 weeks?1 = Very poor to none


2 = Poor


3 = Fair


4 = Good


5 = Very good


-1 = Participant declines to answer
List of values
2647Baseline surveyEPIC26Qu1212. Overall, how big a problem has your sexual function or lack of sexual function been for you during the last 4 weeks?1 = No problem


2 = Very small problem


3 = Small problem


4 = Moderate problem


5 = Big problem


-1 = Participant declines to answer
List of values
2648Baseline surveyEPIC26Qu13AA. Hot flashes1 = No problem


2 = Very small problem


3 = Small problem


4 = Moderate problem


5 = Big problem


-1 = Participant declines to answer
List of values
2649Baseline surveyEPIC26Qu13BB. Breast tenderness/enlargement1 = No problem


2 = Very small problem


3 = Small problem


4 = Moderate problem


5 = Big problem


-1 = Participant declines to answer
List of values
2650Baseline surveyEPIC26Qu13CC. Feeling depressed1 = No problem


2 = Very small problem


3 = Small problem


4 = Moderate problem


5 = Big problem


-1 = Participant declines to answer
List of values
2651Baseline surveyEPIC26Qu13DD. Lack of energy1 = No problem


2 = Very small problem


3 = Small problem


4 = Moderate problem


5 = Big problem


-1 = Participant declines to answer
List of values
2652Baseline surveyEPIC26Qu13EE. Change in body weight1 = No problem


2 = Very small problem


3 = Small problem


4 = Moderate problem


5 = Big problem


-1 = Participant declines to answer
List of values
2653Baseline surveyEPIC26Qu1313. How big a problem during the last 4 weeks, if any, has each of the following been for you?1 = No problem


2 = Very small problem


3 = Small problem


4 = Moderate problem


5 = Big problem


-1 = Participant declines to answer
Group of Lists
2654Baseline surveyLIBIDOQu11. During the last 4 weeks, to what extent were you interested in sex?0 = Not at all


1 = A little


2 = Quite a bit


3 = Very much


-1 = Participant declines to answer
List of values
2655Baseline surveyLIBIDOQu22. Have you used any medications or devices to aid or improve erections?0 = No


1 = Yes


-1 = Participant declines to answer
List of values
2656Baseline surveyLIBIDOQu3AA. Viagra or another pill to improve your erections?0 = Have not tried it


1 = Tried it but was not helpful


2 = It helped but I am not using it now


3 = It helped and I use it sometimes


4 = It helped and I use it always


-1 = Participant declines to answer
List of values
2657Baseline surveyLIBIDOQu3BB. Muse (intra‐urethral alprostadil suppository) to improve your erections?0 = Have not tried it


1 = Tried it but was not helpful


2 = It helped but I am not using it now


3 = It helped and I use it sometimes


4 = It helped and I use it always


-1 = Participant declines to answer
List of values
2658Baseline surveyLIBIDOQu3CC. Penile injection therapy (such as caverject) to improve your erections?0 = Have not tried it


1 = Tried it but was not helpful


2 = It helped but I am not using it now


3 = It helped and I use it sometimes


4 = It helped and I use it always


-1 = Participant declines to answer
List of values
2659Baseline surveyLIBIDOQu3DD. Vacuum erection device (such as erect-aid) to improve your erections?0 = Have not tried it


1 = Tried it but was not helpful


2 = It helped but I am not using it now


3 = It helped and I use it sometimes


4 = It helped and I use it always


-1 = Participant declines to answer
List of values
2660Baseline surveyLIBIDOQu3EE. Medication/device other than those explicitly listed to improve your erections?0 = Have not tried it


1 = Tried it but was not helpful


2 = It helped but I am not using it now


3 = It helped and I use it sometimes


4 = It helped and I use it always


-1 = Participant declines to answer
List of values
2661Baseline surveyLIBIDOQu33. Please indicate whether or not you have tried or currently use:0 = Have not tried it


1 = Tried it but was not helpful


2 = It helped but I am not using it now


3 = It helped and I use it sometimes


4 = It helped and I use it always


-1 = Participant declines to answer
Group of Lists
2662Baseline surveyComorbQu1A. Heart disease (for example angina, heart attack, or heart failure)0 = No


1 = Yes


-1 = Participant declines to answer
List of values
2663Baseline surveyComorbQu2B. High blood pressure0 = No


1 = Yes


-1 = Participant declines to answer
List of values
2664Baseline surveyComorbQu3C. Leg pain when walking due to poor circulation0 = No


1 = Yes


-1 = Participant declines to answer
List of values
2665Baseline surveyComorbQu4D. Lung disease (for example asthma, chronic bronchitis, or emphysema)0 = No


1 = Yes


-1 = Participant declines to answer
List of values
2666Baseline surveyComorbQu5E. Diabetes0 = No


1 = Yes


-1 = Participant declines to answer
List of values
2667Baseline surveyComorbQu6F. Kidney disease0 = No


1 = Yes


-1 = Participant declines to answer
List of values
2668Baseline surveyComorbQu7G. Liver disease0 = No


1 = Yes


-1 = Participant declines to answer
List of values
2669Baseline surveyComorbQu8H. Problems caused by stroke0 = No


1 = Yes


-1 = Participant declines to answer
List of values
2670Baseline surveyComorbQu9I. Disease of the nervous system (for example Parkinson’s disease or multiple sclerosis)0 = No


1 = Yes


-1 = Participant declines to answer
List of values
2671Baseline surveyComorbQu10J. Malignant primary cancer other than prostate cancer within the last five years0 = No


1 = Yes


-1 = Participant declines to answer
List of values
2672Baseline surveyComorbQu11K. Depression0 = No


1 = Yes


-1 = Participant declines to answer
List of values
2673Baseline surveyComorbQu12L. Arthritis0 = No


1 = Yes


-1 = Participant declines to answer
List of values
2674Baseline surveyComorbQu0M. Do you have any diseases other than those listed above?0 = No


1 = Yes


-1 = Participant declines to answer
List of values
2675Baseline surveyComorbQu1. Have you been told by a doctor that you have any of the following?0 = No


1 = Yes


-1 = Participant declines to answer
Group of Lists
2676Baseline surveyEPICSurveyModeSurvey Mode1 = Phone


2 = Email


3 = Mail


4 = Site
List of values
2677Baseline surveyDtBaselineCompleteDate CompletedNADate
2678Baseline surveynationality1. What is your country of birth?1 = Ireland


2 = Other


-1 = Participant declines to answer
List of values
2679Baseline surveynationotherOther nationality:NAText
2680Baseline surveyethnicity2. What is your ethnicity?1 = Irish


2 = Irish Traveller


3 = Roma


4 = Any other White background


5 = African


6 = Any other Black background


7 = Chinese


8 = Indian/Pakistani/Bangladeshi


9 = Any other Asian background


10 = Arabic


11 = Mixed, write in description


12 = Other, write in description
Drop-down list
2681Baseline surveymaritalstatus​3. What is your marital status?1 = Single


2 = Married (including cohabiting, civil partnership)


3 = Separated


4 = Divorced


5 = Widowed


-1 = Participant declines to answer
List of values
2682Baseline surveychildren4. Do you have children?1 = Yes


0 = No
List of values
2683Baseline surveynchildren5. Number of childrenNAInteger
2684Baseline surveynchildren18​6. Number of children under 18NAInteger
2685Baseline surveycurrlivingarrange7. What is your current living arrangement?1 = Alone


2 = With spouse or partner (with/without children)


3 = With other family


4 = Assisted living


5 = Nursing home


6 = Other


-1 = Participant declines to answer
List of values
2686Baseline surveylivingotherOther living arrangement:NAText
2687Baseline surveycounton8. How many people are so close to you that you can count on them if you have serious personal problems?1 = None


2 = 1 or 2


3 = 3 to 5


4 = More than 5


-1 = Participant declines to answer
List of values
2688Baseline surveyfriendlyinterest9. How much friendly interest do people take in what you are doing?1 = None


2 = Little


3 = Some


4 = A lot


5 = Uncertain


-1 = Participant declines to answer
List of values
2689Baseline surveycurrlivingplace10. Would you describe the place where you currently live as being?1 = In Dublin city or county


2 = In a city (other than Dublin)


3 = In a town (1500+ people)


4 = In a village


5 = In open country


-1 = Participant declines to answer
List of values
2690Baseline surveyeducationcomp11. What is the highest level of education you have completed?1 = No formal education


2 = Primary school


3 = Secondary school


4 = Third level


-1 = Participant declines to answer
List of values
2691Baseline surveyoccupation12. What is your occupational status?1 = Employed, full-time


2 = Employed, part-time


3 = Self-employed


4 = Unemployed


5 = Retired


6 = Other


-1 = Participant declines to answer
List of values
2692Baseline surveyincome13. What is your annual household income range?1 = <15,000 euro


2 = 15,000-35,000 euro


3 = 35,000-55,000 euro


4 = >55,000 euro


-1 = Participant declines to answer
List of values
2693Baseline surveymedicalcard14. At the time of your diagnosis, did you have a medical card?1 = Yes


0 = No
List of values
2694Baseline surveyprivhealthins15. At the time of your diagnosis, did you have private health insurance?1 = Yes


0 = No
List of values
2714TURPTurpYNTURP0 = No


1 = Yes
Drop-down list
2715TURPTurpDtDate of TURPNADate
2716TURPTurpPSAStatusPSA Status1 = Taken


2 = Not taken
Drop-down list
2717TURPTurpPSAPSA levelNADrop-down list
2718TURPTurpClinSurgeonNASearch list
2719TURPTurpInstTreatment InstituteNADrop-down list
2720TURPTurpClinicalTrialIs participant enrolled in a Clinical Trial?1 = Yes


0 = No


-1 = Not stated
Drop-down list
2721TURPTurpTrialNumberTrial NumberNAText
2722TURPTurpTumourPresYNPresence of Tumour0 = No


1 = Yes


9 = Not Known
Drop-down list
2723TURPTurpHistTypeHistology 11 = 8140/3 = Adenocarcinoma


2 = 8480/3 = Mucinous (colloid)


3 = 8490/3 = Signet ring-like cell


6 = 8500/3 = Ductal adenocarcinoma


7 = 8120/3 = Urothelial carcinoma


8 = 8560/3 = Adenosquamous carcinoma


9 = 8070/3 = Squamous cell carcinoma


11 = 8147/3 = Basal cell carcinoma


12 = 8574/3 = Adenocarcinoma with neuroendocrine differentiation


13 = 8240/3 = Well differentiated neuroendocrine tumour


14 = 8041/3 = Small-cell neuroendocrine carcinoma


20 = 8572/3 = Sarcomatoid


21 = 8500/2 = Intraductal carcinoma


99 = Other


100 = Unknown
Drop-down list
2724TURPOtherHistoTypeCodeHistology Type OtherNAText
2725TURPTurpHistType2Histology 21 = 8140/3 = Adenocarcinoma


2 = 8480/3 = Mucinous (colloid)


3 = 8490/3 = Signet ring-like cell


6 = 8500/3 = Ductal adenocarcinoma


7 = 8120/3 = Urothelial carcinoma


8 = 8560/3 = Adenosquamous carcinoma


9 = 8070/3 = Squamous cell carcinoma


11 = 8147/3 = Basal cell carcinoma


12 = 8574/3 = Adenocarcinoma with neuroendocrine differentiation


13 = 8240/3 = Well differentiated neuroendocrine tumour


14 = 8041/3 = Small-cell neuroendocrine carcinoma


20 = 8572/3 = Sarcomatoid


21 = 8500/2 = Intraductal carcinoma


99 = Other


100 = Unknown
Drop-down list
2726TURPOtherHistoTypeCode2Histology 2 Type OtherNAText
2727TURPTurpHistType3Histology 31 = 8140/3 = Adenocarcinoma


2 = 8480/3 = Mucinous (colloid)


3 = 8490/3 = Signet ring-like cell


6 = 8500/3 = Ductal adenocarcinoma


7 = 8120/3 = Urothelial carcinoma


8 = 8560/3 = Adenosquamous carcinoma


9 = 8070/3 = Squamous cell carcinoma


11 = 8147/3 = Basal cell carcinoma


12 = 8574/3 = Adenocarcinoma with neuroendocrine differentiation


13 = 8240/3 = Well differentiated neuroendocrine tumour


14 = 8041/3 = Small-cell neuroendocrine carcinoma


20 = 8572/3 = Sarcomatoid


21 = 8500/2 = Intraductal carcinoma


99 = Other


100 = Unknown
Drop-down list
2728TURPOtherHistoTypeCode3Histology 3 Type OtherNAText
2729TURPTurpGle1Gleason Score1 = 1


2 = 2


3 = 3


4 = 4


5 = 5


-1 = Not stated


-2 = No pathology report


-3 = Insufficient sample
Drop-down list
2730TURPTurpGle2+1 = 1


2 = 2


3 = 3


4 = 4


5 = 5


-1 = Not stated


-2 = No pathology report


-3 = Insufficient sample
Drop-down list
2731TURPTurpGleSum=NAInteger
2739WWASWwAsYNWatchful waiting/active surveillance0 = No


1 = Yes


9 = Not known
Drop-down list
2740WWASWwAsDtDate of Watchful waiting/active surveillanceNADate
2741WWASWWASTypeSurveillance type1 = Active surveillance


2 = Watchful waiting
Drop-down list
2742WWASAsClinTypeClinician Monitoring Patient1 = Specialist


2 = GP


3 = Both (Specialist + GP)
Drop-down list
2743WWASAsClinClinicianNASearch list
2744WWASAsInstTreatment InstituteNADrop-down list
2745WWASAsClinicalTrialIs participant enrolled in a Clinical Trial?1 = Yes


0 = No


-1 = Not stated
Drop-down list
2746WWASAsTrialNumberTrial NumberNAText
2747WWASTransWWTransitioned to Watchful Waiting?NABoolean

Irish Prostate Cancer Outcomes Research - About IPCOR

About IPCOR

Aims

The IPCOR clinical quality registry project aims to create a novel comprehensive prostate cancer outcomes dataset and biorepository enabling quality improvement at sites along with high-quality clinical and translation research.

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Irish Prostate Cancer Outcomes Research - Research and Publications

Research and Publications

Research

IPCOR has published a number of reports and scientific articles as well as several abstracts, posters and presentations regarding prostate cancer care and outcomes.

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Irish Prostate Cancer Outcomes Research - Media

Media

Media articles, radio shows and podcasts

IPCOR is featured in a number of media articles, radio shows and podcasts.

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