1. Canadian Organ Replacement Register (CORR) Report on CORR Performance and Recent Trends in Donor, Transplant and Waiting Statistics in Canada-Preliminary Results CAT Clinical Donation Symposium Dr. Lilyanna Trpeski Program Lead for CORR CORR Annual Meeting, Mont Tremblant Saturday March 1st, 2008

2. OUTLINE About CORR New Initiatives at CORR Continuous Reporting to CORR Organ Donation and Transplantation Statistics

3. What is CORR? Canada’s 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

4. 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 determined in collaboration with a Board of Directors comprised of representatives from CSN, CST, CANNT, CAT and Health Canada Current President, Dr. Joanne Kappel (St Paul’s Hospital, Saskatoon – Kidney) Kim Young – CCDT representative Raylene Matlock - CAT representative

5. Total of 36,214

7. Data Sources ProvWaiting ListDonorTransplant ABHOPE – Edmonton; HOPE Calgary Deceased - HOPE – Edmonton; HOPE Calgary Living – Transplant programs Transplant programs Edmonton and Calgary 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 é bec-TransplantDeceased - Qu é bec-Transplant; Living – Transplant programs Transplant programs in hospitals (10 facilities) NS/PEMOTP (Halifax) NBMultiple Organ Retrieval and Exchange Program NLOPEN

8. Transplant coordinator Post transplant coordinator clerk Donor coordinator Data quality clerk Data entry Analysis Reporting Physician’s notes Transmitting to CIHI-CORR Transplant form for CORR Collaborative effort

9. Current Activities & Directions Expansion of data set in 2008/09 (HLA C capture) Increased focus on data quality (includes linkage projects, data validation for liver data with CCDT, CAT and Transplant surgeons) Continued analytical support to the research community – CORR participated at CRESCENT meeting

10. Data Quality Initiatives Example : Liver Transplants Validation Process Participation in Working liver data group ( CCDT, CAT, CORR ) Lead by Dr Kelly Burak Investigated discrepancies of number of deaths on the waiting list for liver transplants Examining organ sharing reporting

11. 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 2008) – 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 2008 Quick Stats http://secure.cihi.ca/cihiweb/dispPage.jsp?cw_page=statistics_results_topic_transplants_e&cw_topic=Healt h%20Conditions&cw_subtopic=Organ%20Donation%20and%20Transplantation Directory of participating centres – free PDF Instruction Manuals

12. New Initiatives in CORR

13. CORR Projects in 2007/2008 Improving Timeliness of Data! Data Quality-Comorbidity Re Abstraction Study CORR Feasibility Study

14. Continuous Reporting Started in April 2008- Initial information and one consecutive reminder Continuous monitoring and extra data entry staff Newsletter about continuous reporting in November 2008 Annual report with 2005 data being released on February 28 th, 2008 2006 data ready for publishing and new Annual report scheduled for September 2008

15. Continuous Reporting Continuous reporting acceptance: –76% of dialysis centers have committed –73% of organ transplant groups –90% of OPOs

16. Continuous Reporting

18. Data Quality Study To evaluate quality of coding of risk factors at start of renal dialysis treatment Final stratified sample (size, location) consists of 1,400 patients from 39 sites (approximately 80% hemodialysis and 20% peritoneal dialysis) Coders hired and trained by CIHI Data collection outside Quebec completed by Dec. 14 th Quebec data collection Spring 2008 (coder availability) Report Fall 2008 Dr. Moist part of steering committee The CIHI team and 6 coders following the training session.

19. E-CORR Feasibility Study Assess options and make recommendations related to electronic data submission and centre-specific reporting for CORR 4 major components (method): –Technical solution options identification (consultation with CIHI IT department) –Data provider needs and capacity assessment (online survey, semi-structured telephone interviews, site visits) –Overlay of technical solutions and data provider needs/capacity –Recommendations, implementation timetable, detailed costing Board involvement at multiple steps Target completion April 2008 Completed site visits to selected transplant and donor data providers (TGLN, Royal Victoria Hospital in Montreal, MOTP in Halifax) Completed telephone interviews (liver, heart, kidney and lung transplant coordinators in Edmonton)

20. Organ Donation, Waiting and Transplantation Statistics

21. Organ Donors, 1 Canada, 1996-2007 (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 (2008) DD 5% DD 13%

22. Deceased Donors (Number) ON & PQ Source: Data from e-CORR Annual Report-2008 Canadian Organ Replacement Register, Canadian Institute for Health Information (2008) 58 organs 571 in US 2005

23. Number of Living Related Donors (LDR) and Living Unrelated Donors (LUR) in Canada,1996-2007 Source: Data from e-CORR Annual Report-2008 Canadian Organ Replacement Register, Canadian Institute for Health Information (2008)

24. Source: Canadian Organ Replacement Register, Canadian Institute for Health Information (2008) Age Distribution for Deceased Donors in Canada and USA in 2006

25. Change in Numbers of Patients on Waiting Lists, Canada 2006-2007 Source: Data from e-CORR Annual Report-2008 Canadian Organ Replacement Register, Canadian Institute for Health Information (2008)

26. Number of Referred Patients,Potential Donors and Procured(Actual) Donors, 2001-2007 Canada Source: Data from e-CORR Annual Report-2008 Canadian Organ Replacement Register, Canadian Institute for Health Information (2008) 42% 86%

27. Deceased Donors Indicators by Province in 2007 Source: Data from e-CORR Annual Report-2008 Canadian Organ Replacement Register, Canadian Institute for Health Information (2008)

28. Transplants, 1 Canada, 1997-2007 (Number) 1 Includes living and deceased donors and combination transplants. Excludes islet cell transplants unless done in combination with a solid organ. Data are from Quarterly Reports provided by Canadian OPOs. Source: Canadian Organ Replacement Register, Canadian Institute for Health Information (2008)

29. Transplants, 1 Canada, 1996-2007 (Rate per million population) 2 1 Includes living and deceased donors and combination transplants. Excludes islet cell transplants unless done in combination with a solid organ. Data are from Quarterly Reports provided by Canadian OPOs 2 Crude rate. Population estimates as of July 1, 2007 https://www.cia.gov/library/publications/the-world-factbook/print/ca.html Source: Canadian Organ Replacement Register, Canadian Institute for Health Information (2008)

30. Transplants 1 and Waiting List at Year-end, 2 Canada, 1996- 2007 (Number) 1 Includes single and combination transplants. 2 Waiting 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 (2008)

31. Growth in Number of Transplanted and Recovered Organs, 2006-2007 Organs TransplantedOrgans Recovered from Deceased Donors Transplanted200520062007Percent Change** Recovered2005 2007Percent Change Organs Total1,9052,0752,1584.36%All DD organs1,7261,8181,9024.62% Deceased donor1,4011,5721,6102.71%All DCD organs01158427.27% Living donor504555548-1.39%All NDD organs1,7261,8071,8442.05% Kidney1,0551,1601,2416.98%Kidney7137908072.15% Deceased donor61268776210.92% Living donor4434734791.35% Pancreas*667267-7.58%Pancreas (all)1438582-3.53% Liver4174594897.19%Liver3724034040.25% Deceased donor3573934207.56% Living donor6066695.00% Intestine110NAIntestine284-50.00% Heart173177169-4.62%Heart1671591643.14% Lung140165149-11.43%Lung1331992000.50% Deceased donor139164149-10.79% Living donor110NA * including pancreas and kidney pancreas transplants;** change in 2007 compared to 2006 Source: Data from e-CORR Annual Report-2008 Canadian Organ Replacement Register, Canadian Institute for Health Information (2008)

32. Organs Retrieved, Transplanted, Shared Between Provinces, Canada and US, 2001-2007 Source: Data from e-CORR Annual Report-2008 Canadian Organ Replacement Register, Canadian Institute for Health Information (2008)

33. Proportion of Organs Used for Transplantation by Organ Type, Canada, 2007 Source: Data from e-CORR Annual Report-2008 Canadian Organ Replacement Register, Canadian Institute for Health Information (2008)

34. Future Directions Further improve continuous reporting to >80% More timely data reporting-producing next annual report in September 2008 Performing ongoing data quality projects Supporting clients through ad hoc request