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CORR et Québec: An Update on Transplantation S. Joseph Kim, MD, PhD, MHS, FRCPC Vice President, CORR Board of Directors Sunday, October 16th, 2011 Outline • Introduction • Purpose • History • Organization • Data (scope, elements, sources, quality) • Trends in transplantation, 2005 to 2009 • Future directions 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 Purpose • Collect, process and analyze summary data on endstage 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 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) 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 Organization • CIHI 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 CORR Board of Directors • Louise Moist President • Joseph Kim Vice President Canadian Society of Transplantation • John Gill Past President • Joanne Kappel Canadian Society of Nephrology • Brenda Hemmelgarn Canadian Society of Nephrology • Rosalie Starzomski Canadian Society of Nephrology Nurses and Technicians • Kim Young Canadian Blood Services • Semeena Iqbal Quebec Society of Nephrology • Charles Poirier Quebec Society of Transplantation • Peter Hoult Kidney Foundation of Canada, Secretary/Treasurer 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 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) DIALYSIS Data Sources Hospital Dialysis Centres1 N = 97 Transplant Hospitals1 n = 28 Satellite Centres1 N = 154 and 21 IHFs2 Provincial Organ Procurement Organizations1 n=6 CORR Regional Dialysis Programs ORN, BC Renal 1 TRANSPLANT Provinces reporting include: Atlantic, QC, ON, MB, SK, AB, and BC 2 IHF=Independent Health Facility Regional Organ Procurement Organizations n=6 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) • 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. Trends in Transplantation 2005 to 2009 Data Quality Percentage of Deceased Donors with Complete Registration in CORR Year Quebec Rest of Canada 2005 99.3 99.3 2006 100 97.9 2007 100 97.7 2008 100 98.5 2009 100 100 Source: Canadian Organ Replacement Register, 2011, CIHI Percentage of Transplants Reported by Centres vs. CORR – KIDNEY Year Quebec Rest of Canada 2005 99.6 99.6 2006 100 98.9 2007 100 100.1 2008 101.5 99.8 2009 103.2 100 Source: Canadian Organ Replacement Register, 2011, CIHI Percentage of Transplants Reported by Centres vs. CORR – LIVER Year Quebec Rest of Canada 2005 100 95.9 2006 100 93.3 2007 100 95.2 2008 99.1 101.8 2009 106.7 98.3 Source: Canadian Organ Replacement Register, 2011, CIHI Percentage of Transplants Reported by Centres vs. CORR – HEART Year Quebec Rest of Canada 2005 100 100 2006 100 97.9 2007 97.2 94.1 2008 100 100 2009 98 99.2 Source: Canadian Organ Replacement Register, 2011, CIHI Percentage of Transplants Reported by Centres vs. CORR – LUNG Year Quebec Rest of Canada 2005 100 99.2 2006 100 100 2007 100 102.6 2008 100 131.8 2009 100 100 Source: Canadian Organ Replacement Register, 2011, CIHI Percentage of Transplants Reported by Centres vs. CORR – PANCREAS Year Quebec Rest of Canada 2005 133.3 98.9 2006 103.6 101.2 2007 105 90.1 2008 100 100 2009 100 100 Source: Canadian Organ Replacement Register, 2011, CIHI Non-Response/Unknown Values in CORR for Deceased Donor Data Elements Data Element Sex Blood Type Race Cause of Death Region 2005 2006 2007 2008 2009 QC 0 0.7 0 0 0 ROC 0 0 0.3 0 0 QC 0 0 0 0 0 ROC 0.4 0 0.6 0.3 0.6 QC 8.1 0.7 0 0 0.7 ROC 50.7 49.4 51 53.3 43.8 QC 0 0 0.7 0.7 0 ROC 4.3 9 7.8 4.5 5.7 Source: Canadian Organ Replacement Register, 2011, CIHI Non-Response/Unknown Values in CORR for Living Donor Data Elements Data Element Sex Blood Type Region 2005 2006 2007 2008 2009 QC 0 0 0 0 0 ROC 0 0.6 0.2 0.2 0 QC 11.8 1.9 2.2 7.4 7.3 ROC 9.3 4.8 0.6 0.8 1.5 Source: Canadian Organ Replacement Register, 2011, CIHI Non-Response/Unknown Values in CORR for Transplant Recipient Data Elements Data Element Sex Race Diagnosis Cause of GF Cause of Death Region 2005 2006 2007 2008 2009 QC 0 0 0 0 0 ROC 0 0 0.1 0 0 QC 2.7 1.3 2.5 3.2 2.3 ROC 29.3 28 24.4 24.2 24.4 QC 4.1 3.8 1.9 3.0 1.6 ROC 2.7 3.5 8.7 4.8 5.1 QC 39.7 34.6 35.3 40.0 32.4 ROC 44.7 57.5 62.1 46.3 56.3 QC 27.5 20.6 33.3 30.0 5.0 ROC 21.7 21.1 30.7 15.2 32.6 Source: Canadian Organ Replacement Register, 2011, CIHI Waiting List Statistics Mean Waiting Times for Transplant Recipients – KIDNEY 1600 Mean Days to Transplant 1400 1200 1000 800 600 400 200 0 2005 2006 2007 QC Candidate 2008 2009 ROC Candidate Source: Canadian Organ Replacement Register, 2011, CIHI Mean Waiting Times for Transplant Recipients – LIVER Mean Days to Transplant 400 350 300 250 200 150 100 50 0 2005 2006 2007 QC Candidate 2008 2009 ROC Candidate Source: Canadian Organ Replacement Register, 2011, CIHI Mean Waiting Times for Transplant Recipients – HEART Mean Days to Transplant 250 200 150 100 50 0 2005 2006 2007 QC Candidate 2008 2009 ROC Candidate Source: Canadian Organ Replacement Register, 2011, CIHI Mean Waiting Times for Transplant Recipients – LUNG 700 Mean Days to Transplant 600 500 400 300 200 100 0 2005 2006 2007 QC Candidate 2008 2009 ROC Candidate Source: Canadian Organ Replacement Register, 2011, CIHI Mean Waiting Times for Transplant Recipients – PANCREAS 1200 Mean Days to Transplant 1000 800 600 400 200 0 2005 2006 2007 QC Candidate 2008 2009 ROC Candidate Source: Canadian Organ Replacement Register, 2011, CIHI 1800 10 1600 9 1400 8 7 1200 6 1000 5 800 4 600 3 400 2 200 1 0 Waitlist Mortality Rate (%) Number of Waitlist Candidates Number of Wait-Listed Candidates and Mortality Rate – KIDNEY 0 2005 QC Candidate 2006 2007 ROC Candidate 2008 QC Mortality 2009 ROC Mortality Source: Canadian Organ Replacement Register, 2011, CIHI Number of Wait-Listed Candidates and Mortality Rate – LIVER 600 50 45 40 35 400 30 300 25 20 200 15 10 100 5 0 Waitlist Mortality Rate per Year (%) Number of Waitlist Candidates 500 0 2005 2006 QC Candidate 2007 ROC Candidate 2008 QC Mortality 2009 ROC Mortality Source: Canadian Organ Replacement Register, 2011, CIHI Number of Wait-Listed Candidates and Mortality Rate – HEART 70 50 45 40 50 35 30 40 25 30 20 15 20 10 10 5 0 0 2005 QC Candidate 2006 2007 ROC Candidate 2008 QC Mortality 2009 ROC Mortality Source: Canadian Organ Replacement Register, 2011, CIHI Waitlist Mortality Rate per Year (%) Number of Waitlist Candidates 60 Number of Wait-Listed Candidates and Mortality Rate – LUNG 140 50 45 40 100 35 30 80 25 60 20 15 40 10 20 5 0 0 2005 2006 QC Candidate 2007 ROC Candidate 2008 QC Mortality 2009 ROC Mortality Source: Canadian Organ Replacement Register, 2011, CIHI Waitlist Mortality Rate per Year (%) Number of Waitlist Candidates 120 Number of Wait-Listed Candidates and Mortality Rate – PANCREAS 140 10 9 8 100 7 6 80 5 60 4 3 40 2 20 1 0 0 2005 2006 QC Candidate 2007 ROC Candidate 2008 QC Mortality 2009 ROC Mortality Source: Canadian Organ Replacement Register, 2011, CIHI Waitlist Mortality Rate per Year (%) Number of Transplant Candidates 120 Sensitization Among Kidney Transplant Recipients Quebec Rest of Canada 100% 100% 90% 90% 80% 80% 70% 70% 60% 60% 50% 50% 40% 40% 30% 30% 20% 20% 10% 10% 0% 2005 0% 2005 PRA 0-19% 2006 2007 PRA 20-79% 2008 PRA 80-100% 2009 Missing 2006 2007 2008 PRA 0-19% PRA 20-79% PRA 80-100% Missing 2009 Source: Canadian Organ Replacement Register, 2011, CIHI Donor Activity Deceased Donor Rate (PMP) by Region Rate per Million Population 25 20 15 10 5 0 2005 2006 Atlantic 2007 Ontario Quebec 2008 2009 West Source: Canadian Organ Replacement Register, 2011, CIHI 38 Living Donor Rate (PMP) by Region Rate per Million Population 25 20 15 10 5 0 2005 2006 Atlantic 2007 Ontario Quebec 2008 2009 West Source: Canadian Organ Replacement Register, 2011, CIHI 39 Number of Organ Donors by Donor Source Number of Organ Donors 600 500 400 300 200 100 0 2005 Deceased Quebec 2006 2007 Deceased Rest of Canada 2008 Living Quebec 2009 Living Rest of Canada Source: Canadian Organ Replacement Register, 2011, CIHI Transplant Activity Number of Transplants: Quebec vs. Rest of Canada Organ Type Region 2005 2006 2007 2008 2009 QC 191 205 216 225 217 ROC 424 507 553 513 549 QC 49 47 46 52 40 ROC 392 440 437 426 418 Kidney - Deceased Kidney - Living Source: Canadian Organ Replacement Register, 2011, CIHI Number of Transplants: Quebec vs. Rest of Canada Organ Type Region 2005 2006 2007 2008 2009 QC 94 101 107 110 111 ROC 269 298 302 275 285 QC <5 5 0 <5 <5 ROC 57 62 71 66 56 Liver - Deceased Liver - Living Source: Canadian Organ Replacement Register, 2011, CIHI Number of Transplants: Quebec vs. Rest of Canada Data Element Region 2005 2006 2007 2008 2009 QC 40 37 35 47 50 ROC 134 141 128 117 118 QC 23 34 30 26 32 ROC 122 137 157 141 157 QC 24 29 21 23 16 ROC 86 83 73 96 93 Heart Lung Pancreas Source: Canadian Organ Replacement Register, 2011, CIHI Number of Transplants By Donor Age: Quebec vs. Rest of Canada Data Element Region 2005 2006 2007 2008 2009 QC 250 265 262 277 216 ROC 954 1,115 1,091 1,062 1,061 QC 95 103 93 103 107 ROC 349 324 417 387 347 QC 74 83 94 102 136 ROC 150 195 209 179 261 QC <5 0 0 0 <5 ROC 29 28 <5 <5 <5 < 50 years 50 to 59 years ≥ 60 years Missing Source: Canadian Organ Replacement Register, 2011, CIHI Transplant Outcomes Total Graft Survival, Living Donor Kidney Transplants, 2000 to 2009 1 0.9655 0.9813 0.9532 0.9701 0.9178 0.9404 0.9 0.9072 0.8952 Survival Probability 0.8 0.7 0.6 0.5 0.4 0.3 0.2 0.1 0 3 Months 1 Year Quebec 3 Years 5 Years Rest of Canada Source: Canadian Organ Replacement Register, 2011, CIHI Total Graft Survival, Deceased Donor Kidney Transplants, 2000 to 2009 1 0.9495 0.9579 0.9264 0.9302 0.8854 0.9 0.8667 0.8334 0.8014 Survival Probability 0.8 0.7 0.6 0.5 0.4 0.3 0.2 0.1 0 3 Months 1 Year Quebec 3 Years 5 Years Rest of Canada Source: Canadian Organ Replacement Register, 2011, CIHI Total Graft Survival, Deceased Donor Liver Transplants, 2000 to 2009 1 0.9 0.9268 0.8125 0.7904 0.8 Survival Probability 0.8705 0.8629 0.7677 0.7326 0.7 0.6993 0.6 0.5 0.4 0.3 0.2 0.1 0 3 Months 1 Year Quebec 3 Years 5 Years Rest of Canada Source: Canadian Organ Replacement Register, 2011, CIHI Total Graft Survival, Deceased Donor Heart Transplants, 2000 to 2009 1 0.9 0.8693 0.8902 0.8517 0.8638 0.8382 0.8362 0.8189 0.8055 Survival Probability 0.8 0.7 0.6 0.5 0.4 0.3 0.2 0.1 0 3 Months 1 Year Quebec 3 Years 5 Years Rest of Canada Source: Canadian Organ Replacement Register, 2011, CIHI Total Graft Survival, Deceased Donor Lung Transplants, 2000 to 2009 1 0.9 0.8971 0.9061 0.8309 0.846 0.8 0.7486 Survival Probability 0.711 0.7 0.657 0.6291 0.6 0.5 0.4 0.3 0.2 0.1 0 3 Months 1 Year Quebec 3 Years 5 Years Rest of Canada Source: Canadian Organ Replacement Register, 2011, CIHI Total Patient Survival, Living Donor Kidney Transplants, 2000 to 2009 1 0.9951 0.9971 0.9901 0.992 0.9797 0.9758 0.9729 0.9529 0.9 Survival Probability 0.8 0.7 0.6 0.5 0.4 0.3 0.2 0.1 0 3 Months 1 Year Quebec 3 Years 5 Years Rest of Canada Source: Canadian Organ Replacement Register, 2011, CIHI Total Patient Survival, Deceased Donor Kidney Transplants, 2000 to 2009 1 0.9903 0.9861 0.978 0.9694 0.944 0.9328 0.9 0.9145 0.8915 Survival Probability 0.8 0.7 0.6 0.5 0.4 0.3 0.2 0.1 0 3 Months 1 Year Quebec 3 Years 5 Years Rest of Canada Source: Canadian Organ Replacement Register, 2011, CIHI Total Patient Survival, Deceased Donor Liver Transplants, 2000 to 2009 1 0.954 0.903 0.9 0.9022 0.8506 0.785 0.8 Survival Probability 0.8487 0.8042 0.7537 0.7 0.6 0.5 0.4 0.3 0.2 0.1 0 3 Months 1 Year Quebec 3 Years 5 Years Rest of Canada Source: Canadian Organ Replacement Register, 2011, CIHI Total Patient Survival, Deceased Donor Heart Transplants, 2000 to 2009 1 0.9 0.8693 0.8919 0.8542 0.8672 0.8407 0.8422 0.8214 0.814 Survival Probability 0.8 0.7 0.6 0.5 0.4 0.3 0.2 0.1 0 3 Months 1 Year Quebec 3 Years 5 Years Rest of Canada Source: Canadian Organ Replacement Register, 2011, CIHI Total Patient Survival, Deceased Donor Lung Transplants, 2000 to 2009 1 0.9 0.8971 0.912 0.8309 0.8536 Survival Probability 0.8 0.7528 0.7229 0.7 0.6545 0.6458 0.6 0.5 0.4 0.3 0.2 0.1 0 3 Months 1 Year Quebec 3 Years 5 Years Rest of Canada Source: Canadian Organ Replacement Register, 2011, CIHI 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 Questions? 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