1. CORR et Québec: An Update on Transplantation S. Joseph Kim, MD, PhD, MHS, FRCPC Vice President, CORR Board of Directors Sunday, October 16 th, 2011

2. Outline Introduction Purpose History Organization Data (scope, elements, sources, quality) Trends in transplantation, 2005 to 2009 Future directions

3. Introduction Canadian Organ Replacement Register (CORR) is the national information system for end-stage renal disease and solid organ transplantation Day-to-day operations currently based at the Canadian Institute for Health Information (CIHI) Mission: To provide a national database on vital organ replacement therapy in Canada, with the goal of enhancing treatment, research, and patient care CORR Board of Directors is responsible for providing strategic advice to CIHI re: the register

4. Purpose Collect, process and analyze summary data on end- stage organ failure and organ transplants Provide a pan-Canadian view on end-stage organ failure statistics for comparative analyses Increase the availability of comparative material to facilitate development of treatment algorithms Provide statistics on long-term trends that can be used for program and system planning Provide a feedback mechanism to facilities, a quality assurance function for treatment, and a national standard for comparison

5. History 1972 – CORR began as a renal failure registry under the leadership of Dr. Arthur Shimizu 1973 – Registry transferred to Statistics Canada in collaboration with Kidney Foundation of Canada (KFOC) 1974 – First report produced Mid-1970’s – Detailed reports of dialysis and kidney transplantation activity continued 1980 – Registry revived after few years of inactivity under new partnership between KFOC, Health and Welfare Canada, and Statistics Canada 1981 – Data collection re-initiated on all chronic renal failure patients on RRT (data previously collected were lost)

6. History (cont’d) 1985 – Advisory Committee on Institutional and Medical Services (ACIMS) recommended including data on extra-renal organ transplants in registry 1987 – Hospital Medical Records Institute (HMRI) awarded contract to operate new expanded registry 1988 – CORR started collecting data on extra-renal organ transplants 1990 – CORR incorporated 1994 – Merger of HMRI and sections of Health Canada and Statistics Canada to form the Canadian Institute for Health Information (CIHI) 1995 – CORR became fully integrated within CIHI

7. Organization CI HI houses and operates the CORR –President & CEO: John Wright –Director, Clinical Registries: Greg Webster –Manager, Clinical Registries: Claire Marie Fortin –Program Lead: Bob Williams –Analysts: Frank Ivis and Yingbo Na CORR Board functions in an advisory role to CIHI providing strategic advice on scientific and health policy matters as well as representing the interests of the renal and organ transplantation communities

8. CORR Board of Directors Louise Moist President Joseph KimVice President Canadian Society of Transplantation John Gill Past President Joanne Kappel Canadian Society of Nephrology Brenda Hemmelgarn Canadian Society of Nephrology Rosalie StarzomskiCanadian Society of Nephrology Nurses and Technicians Kim YoungCanadian Blood Services Semeena IqbalQuebec Society of Nephrology Charles PoirierQuebec Society of Transplantation Peter Hoult Kidney Foundation of Canada, Secretary/Treasurer

9. Scope CORR is patient-oriented – Followed until death or lost to follow-up Captures information on: – Treated patients – Specific treatments – Organ donors – Aggregate transplant waiting list statistics from OPOs – Transplant and dialysis facilities Access to Kidney Transplantation Project – Referral and wait-listing activity at patient-level

10. Data Elements Nearly 600 data elements in CORR database – Patient demographics (DOB, sex, race/ethnicity, postal code) – Diagnosis and co-morbidities – Treatment specific information (HD, PD, solid organ transplants) – Treatment changes (hospital transfers, modality changes, dialysis withdrawal) – Outcomes (organ failures, death) – Donor information (demographics, organs donated and transplanted)

11. Data Sources DIALYSIS HospitalDialysis Centres 1 N = 97 HospitalDialysis Centres 1 N = 97 CORR TRANSPLANT Transplant Hospitals 1 n = 28 n = 28 Satellite Centres 1 N = 154 and 21 IHFs 2 Regional Dialysis Programs ORN, BC Renal Regional Organ ProcurementOrganizations n = 6 Provincial Organ Procurement Organizations 1 n = 6 1 Provinces reporting include: Atlantic, QC, ON, MB, SK, AB, and BC 2 IHF=Independent Health Facility

12. Data Quality CORR is a voluntary registry (i.e., data submission is not provincially or nationally mandated) In 2008, coverage of transplants in CORR was 98.5% vs. coverage of transplants in Discharge Abstracts Database In 2009, 99.7% of aggregate data on kidney transplant counts from OPOs reflected patient-level data in CORR From 2000 to 2009, CORR failed to capture only 77 of 9,344 deceased and living donors From 2000 to 2009, item non-response ≥ 10% occurred in race, causes of graft failure or death, and various comorbid conditions (low to moderate SN, high SP)

13. Medical records from 1,125 incident dialysis patients registered in CORR from 2005 to 2006 Agreement > 97% for HCN, DOB, sex and 71% (47% to 89%) for primary renal disease Comorbid conditions generally under-reported with SN ranging from 0.47 (95% CI, 0.38 to 0.55) for PVD to 0.89 (95% CI, 0.80 to 0.92) for HTN Specificity for comorbid conditions > 93% except for HTN Adjusted hazard ratios for death similar whether calculated with data from CORR or medical record Moist et al. Clin J Am Soc Nephrol 2011;6:813-8.

14. Trends in Transplantation 2005 to 2009

15. Data Quality

16. Percentage of Deceased Donors with Complete Registration in CORR Source: Canadian Organ Replacement Register, 2011, CIHI YearQuebecRest of Canada 200599.3 200610097.9 200710097.7 200810098.5 2009100

17. Percentage of Transplants Reported by Centres vs. CORR – KIDNEY Source: Canadian Organ Replacement Register, 2011, CIHI YearQuebecRest of Canada 200599.6 200610098.9 2007100100.1 2008101.599.8 2009103.2100

18. Percentage of Transplants Reported by Centres vs. CORR – LIVER Source: Canadian Organ Replacement Register, 2011, CIHI YearQuebecRest of Canada 200510095.9 200610093.3 200710095.2 200899.1101.8 2009106.798.3

19. Percentage of Transplants Reported by Centres vs. CORR – HEART Source: Canadian Organ Replacement Register, 2011, CIHI YearQuebecRest of Canada 2005100 200610097.9 200797.294.1 2008100 20099899.2

20. Percentage of Transplants Reported by Centres vs. CORR – LUNG Source: Canadian Organ Replacement Register, 2011, CIHI YearQuebecRest of Canada 200510099.2 2006100 2007100102.6 2008100131.8 2009100

21. Percentage of Transplants Reported by Centres vs. CORR – PANCREAS Source: Canadian Organ Replacement Register, 2011, CIHI YearQuebecRest of Canada 2005133.398.9 2006103.6101.2 200710590.1 2008100 2009100

22. Non-Response/Unknown Values in CORR for Deceased Donor Data Elements Source: Canadian Organ Replacement Register, 2011, CIHI Data ElementRegion20052006200720082009 Sex QC00.7000 ROC000.300 Blood Type QC00000 ROC0.400.60.30.6 Race QC8.10.700 ROC50.749.45153.343.8 Cause of Death QC000.7 0 ROC4.397.84.55.7

23. Non-Response/Unknown Values in CORR for Living Donor Data Elements Source: Canadian Organ Replacement Register, 2011, CIHI Data ElementRegion20052006200720082009 Sex QC00000 ROC00.60.2 0 Blood Type QC11.81.92.27.47.3 ROC9.34.80.60.81.5

24. Non-Response/Unknown Values in CORR for Transplant Recipient Data Elements Source: Canadian Organ Replacement Register, 2011, CIHI Data ElementRegion20052006200720082009 Sex QC00000 ROC000.100 Race QC2.71.32.53.22.3 ROC29.32824.424.224.4 Diagnosis QC4.13.81.93.01.6 ROC2.73.58.74.85.1 Cause of GF QC39.734.635.340.032.4 ROC44.757.562.146.356.3 Cause of Death QC27.520.633.330.05.0 ROC21.721.130.715.232.6

25. Waiting List Statistics

26. Mean Waiting Times for Transplant Recipients – KIDNEY Source: Canadian Organ Replacement Register, 2011, CIHI

27. Mean Waiting Times for Transplant Recipients – LIVER Source: Canadian Organ Replacement Register, 2011, CIHI

28. Mean Waiting Times for Transplant Recipients – HEART Source: Canadian Organ Replacement Register, 2011, CIHI

29. Mean Waiting Times for Transplant Recipients – LUNG Source: Canadian Organ Replacement Register, 2011, CIHI

30. Mean Waiting Times for Transplant Recipients – PANCREAS Source: Canadian Organ Replacement Register, 2011, CIHI

31. Number of Wait-Listed Candidates and Mortality Rate – KIDNEY Source: Canadian Organ Replacement Register, 2011, CIHI

32. Number of Wait-Listed Candidates and Mortality Rate – LIVER Source: Canadian Organ Replacement Register, 2011, CIHI

33. Number of Wait-Listed Candidates and Mortality Rate – HEART Source: Canadian Organ Replacement Register, 2011, CIHI

34. Number of Wait-Listed Candidates and Mortality Rate – LUNG Source: Canadian Organ Replacement Register, 2011, CIHI

35. Number of Wait-Listed Candidates and Mortality Rate – PANCREAS Source: Canadian Organ Replacement Register, 2011, CIHI

36. Sensitization Among Kidney Transplant Recipients Source: Canadian Organ Replacement Register, 2011, CIHI QuebecRest of Canada

37. Donor Activity

38. Deceased Donor Rate (PMP) by Region 38 Source: Canadian Organ Replacement Register, 2011, CIHI

39. Living Donor Rate (PMP) by Region 39 Source: Canadian Organ Replacement Register, 2011, CIHI

40. Number of Organ Donors by Donor Source Source: Canadian Organ Replacement Register, 2011, CIHI

41. Transplant Activity

42. Number of Transplants: Quebec vs. Rest of Canada Source: Canadian Organ Replacement Register, 2011, CIHI Organ TypeRegion20052006200720082009 Kidney - Deceased QC191205216225217 ROC424507553513549 Kidney - Living QC4947465240 ROC392440437426418

43. Number of Transplants: Quebec vs. Rest of Canada Source: Canadian Organ Replacement Register, 2011, CIHI Organ TypeRegion20052006200720082009 Liver - Deceased QC94101107110111 ROC269298302275285 Liver - Living QC< 550 ROC5762716656

44. Number of Transplants: Quebec vs. Rest of Canada Source: Canadian Organ Replacement Register, 2011, CIHI Data ElementRegion20052006200720082009 Heart QC4037354750 ROC134141128117118 Lung QC2334302632 ROC122137157141157 Pancreas QC2429212316 ROC8683739693

45. Number of Transplants By Donor Age: Quebec vs. Rest of Canada Source: Canadian Organ Replacement Register, 2011, CIHI Data ElementRegion20052006200720082009 < 50 years QC250265262277216 ROC9541,1151,0911,0621,061 50 to 59 years QC9510393103107 ROC349324417387347 ≥ 60 years QC748394102136 ROC150195209179261 Missing QC< 5000 ROC2928< 5

46. Transplant Outcomes

47. Total Graft Survival, Living Donor Kidney Transplants, 2000 to 2009 Source: Canadian Organ Replacement Register, 2011, CIHI

48. Total Graft Survival, Deceased Donor Kidney Transplants, 2000 to 2009 Source: Canadian Organ Replacement Register, 2011, CIHI

49. Total Graft Survival, Deceased Donor Liver Transplants, 2000 to 2009 Source: Canadian Organ Replacement Register, 2011, CIHI

50. Total Graft Survival, Deceased Donor Heart Transplants, 2000 to 2009 Source: Canadian Organ Replacement Register, 2011, CIHI

51. Total Graft Survival, Deceased Donor Lung Transplants, 2000 to 2009 Source: Canadian Organ Replacement Register, 2011, CIHI

52. Total Patient Survival, Living Donor Kidney Transplants, 2000 to 2009 Source: Canadian Organ Replacement Register, 2011, CIHI

53. Total Patient Survival, Deceased Donor Kidney Transplants, 2000 to 2009 Source: Canadian Organ Replacement Register, 2011, CIHI

54. Total Patient Survival, Deceased Donor Liver Transplants, 2000 to 2009 Source: Canadian Organ Replacement Register, 2011, CIHI

55. Total Patient Survival, Deceased Donor Heart Transplants, 2000 to 2009 Source: Canadian Organ Replacement Register, 2011, CIHI

56. Total Patient Survival, Deceased Donor Lung Transplants, 2000 to 2009 Source: Canadian Organ Replacement Register, 2011, CIHI

57. Future Directions Access to kidney transplantation feasibility study (WAVE project) Comprehensive transplant data element review eCORR electronic data entry Re-evaluate and revise data request process to improve access to CORR data for investigators CORR Board renewal Strengthen partnerships with stakeholder groups including CBS, CST, CSN, KFOC, OPOs, and provincial renal agencies

58. Questions? joseph.kim@uhn.ca