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Canadian Organ Replacement Register (CORR) Recent Trends in Donor Activity CAT Clinical Donation Symposium Dr. Lilyanna Trpeski Program Lead for CORR CORR Annual Meeting, Banff Friday March 16, 2007

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OUTLINE About CORR New Initiatives at CORR Donor activity and characteristics Retrieved organs usage

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What is CORR? Canadas national database on patients treated for end-stage organ failure Captures information on: Treated patients Specifics of the treatments Organ donors : deceased and living Transplant and dialysis facilities Transplant and waiting list aggregate statistics from OPOs

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cont A fairly limited dataset with respect to organ donation and transplantation, but coverage is extremely high (95%+) especially given the voluntary nature of the registry Initiated in 1981, largely through the grassroots efforts of the nephrology community In 1988 Transplant and OPO community joined CORR Strategic direction is governed by a Board of Directors comprised of representatives from CSN, CST, KFOC, CANNT, CAT and Health Canada Current President, Dr. Joanne Kappel (St Pauls Hospital, Saskatoon Kidney) Greg Kalyta (TGLN) is the CAT representative Kim Young CCDT representative

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Data Sources ProvWaiting ListDonorTransplant ABHOPE Edmonton; HOPE Calgary Deceased - HOPE Edm; HOPE Calgary Living Transplant programs Transplant programs BCBCTS SKSK Transplant Program Provincial office Regina Office SK Transplant Program MBTransplant Program Gift Of Life Program Transplant Manitoba Gift Of Life Program Transplant Program ONTGLN QCQu bec-TransplantDeceased - Qu bec-Transplant; Living Transplant programs Transplant programs NS/PEMOTP (Halifax) NBMultiple Organ Retrieval and Exchange Program NLOPEN

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Transplant and Donor Data Flow at CORR

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New Initiatives in CORR

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Current Activities & Directions Expansion of data set in 2007/8 Increased focus on data quality (includes linkage projects) Enhanced presence on www.cihi.ca/corr Enhanced analytical support to the research community includes the initiation of a Research Subcommittee chaired by Dr. Louise Moist Still working on improved timeliness of data!

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Data Quality Initiatives Example 1: Reported Deaths Validation Process Investigated discrepancies of number of deaths among transplant patients obtained from facility profile data and record level data Surveyed OPOs for routine collection of follow up data including deaths among transplanted patients

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Transplant Programs-AB SK Transplant Program-SK Transplant Program-MB Transplant Hospitals ON (TGLN??) Transplant programs- QC MOTP (Halifax)- NS/PE

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Example of Tracking Missing Death Infromation

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Data Quality Initiatives Example 2: Examinations of HLA Values Dr Nickerson evaluated HLA data received from OPOs between 2000-2004 HLA data re-collection obtained with a help from OPOs New data elements for HLA and PRA proposed

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Proposed Changes to the Serology Test Capture in CORR SEROLOGY RECIPIENT TABLE CHANGES ADD FIELDS: HLA Cw1 and Cw2 Class II PRA current and Class II PRA peak Test Methods ( ELISA, CDC, FLOW/LUMINEX) Donor specific antibodies Y/N RENAME current cytotoxic to Class I PRA current peak cytotoxic to Class I PRA peak DONOR SEROLOGY CHANGES ADD FIELDS: HLA Cw1 and Cw2

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www.cihi.ca/corr Privacy Impact Assessment Presentations E-Reports on Statistics on Organ Transplants, Waiting List and Donors produced bi-annually CORR inSITES (2 issues in 2007) ideas welcomed! http://secure.cihi.ca/cihiweb/dispPage.jsp?cw_page=reports_corrinsites_may2006_e Media releases (2 per year) List of publications where CORR data have been used Historical reports/Last CORR Highlight Report in 2006 Directory of participating centres free PDF Instruction Manuals

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Donor Activity and Usage

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Organ Donors, 1 Canada, 1996-2006 (Number) 1 Deceased donors are defined as donors originating in Canada where at least one solid organ was used for transplant. Data are from Quarterly Reports provided by Canadian OPOs. Source: Canadian Organ Replacement Register, Canadian Institute for Health Information- eStatistics (2007) 12%

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Number of Living Related Donors (LDR) and Living Unrelated Donors (LUR) in Canada,1996- 2006 Source: Canadian Organ Replacement Register, Canadian Institute for Health Information-eStatistics (2007)

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Distribution of Deceased Donors by Age Groups, Canada, 1999-2006

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Distribution of Living Related Donors by Age, Canada, 1999-2006

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Deceased Donors (DCD), Living Donors (LD) by Gender, Canada, 1996-2006

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Ethnicity by Donors in Canada, 1996-2006 NDD- Neurologically determined death; LRD-Living related donor; LUR-Living unrelated donor

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Distribution of Deceased Donors by Cause of Death, Canada, 1999-2006

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Distribution of Deceased Donors by Cause of Death, Province of Retrieval, 1996-2006

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Proportion of Deceased Donors with MVA as a Cause of Death, Canada and US, 1999-2006

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Change in Numbers of Patients on Waiting Lists, Canada 2005-2006

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Transplants 1 and Waiting List at Year-end, 2 Canada, 1995-2004 (Number) 1Includes single and combination transplants. 2Waiting list includes active and on-hold patients and excludes patients who died while on the waiting list. Excludes patients waiting for islet cell transplants. Source: Canadian Organ Replacement Register, Canadian Institute for Health Information (2006)

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Usage of Organs Obtained from Deceased Donors

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Average Number of Organs Used for Transplantation, Canada, 1996-2006

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Organs Retrieved, Transplanted, Shared Between Province, Canada and Us, 1995-2006

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Reason Other then Medical for Not Used Organs, Canada 2003, 2004, 2005

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Growth in Number of Transplanted and Recovered Organs, 2005-2006 Organs TransplantedOrgans Recovered from Deceased Donors Transplanted20052006Percent ChangeRecovered20052006Percent Change Organs Total1,9052,124 11.4% All DD organs1,7261,8074.69% Deceased donor*1,4011,569 12.00% All CDD organs010 Living donor504555 10.0% Kidney1,0551,19813.5%Kidney71379010.80% Deceased donor61271116.1% Living donor4434879.9% Pancreas**66729.09%Pancreas (all)14385-40.56% Liver41745910.07%Liver3724038.33% Deceased donor35739310.08% Living donor606610.00% Intestine110.00%Intestine28300.00% Heart1731772.31%Heart167159-4.79% Lung14016517.86%Lung13319949.62% Deceased donor13916417.99% Living donor110.00% * Including 8 CDD kidneys in 2006; ** Including pancreas and kidney pancreas transplants;

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What is New in 2006 !!!! First 4 CDD Donors procured at TGLN in 2006 10 CDD Organs were transplanted: 8 kidneys 2 livers

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Number of Referred Patients,Potential Donors and Procured(Actual) Donors, 2001-2006 Canada Data from e-CORR Annual Report-2005 Potential/Referrals=42% Procured/Potential=85.6%

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Deceased Donor Practice by Province

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Donor Aggregate Collection Form 1. Number of POTENTIAL deceased organ donors identified by your OPO: ____________ NDD _____________ CDD (Declared NDD/CDD, consent obtained, organ offered - may not be accepted and/or retrieved) 2. Number of ACTUAL deceased organ donors identified by your OPO: ____________ NDD _______________ CDD (All conditions for POTENTIAL DONOR, plus at least one organ retrieved and transplanted) 3. Number of in-province referrals to your OPO: ____________ NDD _______________ CDD(All Patients referred to the OPOs as possible potential donors) Total number of organs retrieved locally: ____________ NDD _______________ CDD

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Completeness of Serology Data

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Data Completeness in CORR

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Completeness of Height and Weight

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Completeness of Blood Type

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Completeness of Race

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Conclusions Number of deceased donors increased in Canada by more then 10% in 2006 compared to n005 New Donors after Cardiac Death procured in Ontario Average age of donors remained similar to year 2005 CVC remained a main cause of death in deceased donors in Canada. Need to differentiate ECD in the future.

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cont Need for better communication and some decisions need to be made Teleconference between OPO and LABs More timeliness reporting to CORR

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Acknowledgements The Canadian Organ Replacement Register (CORR) is a register of the Canadian Institute for Health Information. CORR data would not exist without the support of transplant programs and organ procurement organizations across Canada. CORR has support and participation from the CSN, CST, The Kidney Foundation of Canada, CANNT and CAT.

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QUESTIONS ??????? Ltrpeski@cihi.ca