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 OUTLINE • About CORR • New Initiatives at CORR • Donor activity and characteristics • Retrieved organs usage 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 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 Paul’s Hospital, Saskatoon – Kidney) • Greg Kalyta (TGLN) is the CAT representative • Kim Young –CCDT representative Data Sources Prov Waiting List Donor Transplant AB HOPE – Edmonton; HOPE Calgary Deceased - HOPE – Edm; HOPE Calgary Living – Transplant programs Transplant programs BC BCTS BCTS BCTS SK SK Transplant Program Provincial office Regina Office SK Transplant Program SK Transplant Program MB Transplant Program Gift Of Life Program Transplant Manitoba Gift Of Life Program Transplant Program ON TGLN TGLN TGLN QC Québec-Transplant Deceased - Québec-Transplant; Living – Transplant programs Transplant programs NS/PE MOTP (Halifax) MOTP (Halifax) MOTP (Halifax) NB Multiple Organ Retrieval and Exchange Program NL OPEN Transplant and Donor Data Flow at CORR TRANSPLAN TED PATIENTS DONORS LINKING AT CORR Kidneys KidneyLivers Livers RETRIEVED ORGANS TRANSPLAN TED ORGANS Hearts HeartLungs Lungs Pancreas OPO’s Type Transplanted Outcomes OPO’s or Transplant Programs Type Characteristics Intestine, multivisce ral KidneyHearts KidneyPancreas New Initiatives in CORR 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! 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 OPO’s for routine collection of follow up data including deaths among transplanted patients Transplant Programs-AB SK Transplant Program-SK Transplant Program-MB Transplant Hospitals –ON (TGLN??) Transplant programs- QC MOTP (Halifax)- NS/PE Example of Tracking Missing Death Infromation Patient Level Data Facility profile Difference Deaths ftx Death failured graft Total Deaths ftx Death failured graft Total Deaths ftx Death failured graft Total 26 4 30 24 7 31 2 -3 -1 Data Quality Initiatives Example 2: Examinations of HLA Values • Dr Nickerson evaluated HLA data received from OPO’s between 2000-2004 • HLA data re-collection obtained with a help from OPO’s • New data elements for HLA and PRA proposed 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 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 Donor Activity and Usage Organ Donors,1 Canada, 1996-2006 (Number) 600 12% 500 400 300 200 100 0 1996 1997 1998 1999 2000 2001 2002 2003 2004 2005 2006 Deceased 420 429 415 421 471 420 405 428 414 414 464 Living 265 283 368 392 409 447 440 431 468 504 543 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) Number of Living Related Donors (LDR) and Living Unrelated Donors (LUR) in Canada,19962006 500 450 400 350 300 250 200 150 100 50 0 1996 1997 1998 1999 2000 2001 2002 2003 2004 2005 2006 LRD 221 230 295 296 309 349 328 318 349 391 429 LUR 44 53 74 96 100 102 114 117 124 113 115 Source: Canadian Organ Replacement Register, Canadian Institute for Health Information-eStatistics (2007) Distribution of Deceased Donors by Age Groups, Canada, 1999-2006 2006 2005 2004 2003 2002 2001 2000 1999 0% 10% 20% 30% <1yr 1-14 yrs 40% 15-39 yrs 50% 40-54 yrs 60% 55-69 yrs 70% 70+ yrs 80% 90% 100% Distribution of Living Related Donors by Age, Canada, 1999-2006 2006 2005 2004 2003 2002 2001 2000 1999 0% 10% 20% 30% 40% 50% 60% 15-39 40-54 55-69 70% 80% 90% 100% Deceased Donors (DCD), Living Donors (LD) by Gender, Canada, 1996-2006 100% 90% 80% 70% 60% 50% 40% 30% 20% 10% 0% Deceased Living related Females Males Unknow n Living unrelated Ethnicity by Donors in Canada, 1996-2006 5000 other unknown aboriginal pacific islander indian black asian white 4500 4000 3500 3000 2500 2000 1500 1000 500 0 NDD LRD NDD- Neurologically determined death; LRD-Living related donor; LUR-Living unrelated donor LUR Distribution of Deceased Donors by Cause of Death, Canada, 1999-2006 2006 2004 2002 2000 0% 20% 40% 60% 80% Trauma from M otor Vehicle Collison Cerebrovascular Accident/Stroke Gunshot Anoxia/hypoxia Other Trauma Other Unknown 100% Distribution of Deceased Donors by Cause of Death, Province of Retrieval, 1996-2006 SK QC ON ATL MB BC AB 0% 20% 40% Trauma from Motor Vehicle Collison Gunshot Other Trauma Unknow n 60% 80% Cerebrovascular Accident/Stroke Anoxia/hypoxia Other 100% Proportion of Deceased Donors with MVA as a Cause of Death, Canada and US, 1999-2006 30 25 % 20 15 10 5 0 2006 2005 2004 2003 2002 2001 2000 1999 US 20.6 20.1 21.3 22.1 23.7 22.6 24.2 23.1 CA 10.9 10.1 14.3 13.6 12.8 17 21.4 22.27 Change in Numbers of Patients on Waiting Lists, Canada 2005-2006 180 160 Percentage Change 140 120 100 80 60 40 20 0 kidney pancreas double lung single lung pancreas heart liver -40 kidney -20 Transplants1 and Waiting List at Year-end,2 Canada, 1995-2004 (Number) 4500 4000 3500 3000 2500 2000 1500 1000 500 0 95 9 96 9 97 9 98 9 99 0 00 0 01 0 02 0 03 0 04 0 05 0 06 9 1 1 1 1 1 2 2 2 2 2 2 2 Donors Transplants Waiting List 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) Usage of Organs Obtained from Deceased Donors Average Number of Organs Used for Transplantation, Canada, 1996-2006 3.45 3.4 Average 3.35 3.3 3.25 3.2 3.15 3.1 1996 1997 1998 1999 2000 2001 2002 2003 2004 2005 2006 Average Number of Organs Transplanted per Donor Organs Retrieved, Transplanted, Shared Between Province, Canada and Us, 1995-2006 2000 1800 1600 2001 2002 2003 1400 2004 1200 2005 1000 2006 800 600 400 200 0 Imported Exported Between provinces Transplanted Retrieved Resons Deceased Organs Retrieved and Not Transplanted in Canada , 2000-2006 361 1135 1639 404 5889 non medical medical no consent unknown research Reason Other then Medical for Not Used Organs, Canada 2003, 2004, 2005 2005 2004 2003 0 50 100 Team/logistic No suitable recipient Other No program Unknown 150 Growth in Number of Transplanted and Recovered Organs, 2005-2006 Organs Transplanted Transplanted 2005 Organs Recovered from Deceased Donors 2006 Percent Change Organs Total Recovered 2005 2006 Percent Change 1,726 1,807 4.69% 0 10 Kidney 713 790 10.80% Pancreas (all) 143 85 -40.56% Liver 372 403 8.33% 2 8 300.00% Organs 1,905 2,124 11.4% 1,401 1,569 12.00% 504 555 10.0% 1,055 1,198 13.5% Deceased donor 612 711 16.1% Living donor 443 487 9.9% 66 72 9.09% 417 459 10.07% 357 393 10.08% 60 66 10.00% 1 1 0.00% Intestine Heart 173 177 2.31% Heart 167 159 -4.79% Lung 140 165 17.86% Lung 133 199 49.62% 139 164 17.99% 1 1 0.00% Deceased donor* Living donor Kidney Pancreas** Liver Deceased donor Living donor Intestine Deceased donor Living donor All DD organs All CDD organs * Including 8 CDD kidneys in 2006; ** Including pancreas and kidney pancreas transplants; What is New in 2006 !!!! • First 4 CDD Donors procured at TGLN in 2006 • 10 CDD Organs were transplanted: – 8 kidneys – 2 livers Number of Referred Patients,Potential Donors and Procured(Actual) Donors, 2001-2006 Canada 1400 1200 1000 Procured Potential Referals Potential/Referrals=42% 800 600 400 Procured/Potential=85.6% 200 0 2001 2002 2003 Data from e-CORR Annual Report-2005 2004 2005 2006 Deceased Donor Practice by Province 120.0 100.0 80.0 proc/poten 60.0 pot/ref 40.0 20.0 0.0 AB BC MB ATL ON QC SK CA 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 Completeness of Serology Data 100% 80% 60% 40% 20% 0% CMV Hep BCAB HepBSAG HepC HIVF Epstein_B arr virus Unknown 5448 3822 4009 5273 3654 2527 Negative 4522 3160 8416 7120 8795 9283 Positive 4278 183 36 68 12 651 Data Completeness in CORR Completeness of Height and Weight 10000 9000 8000 7000 6000 5000 4000 3000 2000 1000 0 N Y Height Weight Completeness of Blood Type 4% 33% A AB B O 51% 3% 9% U Completeness of Race 29% Y N 71% 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. cont • Need for better communication and some decisions need to be made • Teleconference between OPO and LABs • More timeliness reporting to CORR 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. QUESTIONS ??????? Ltrpeski@cihi.ca