1. Le Registre Canadien des Insuffisances et des Transplantations d'organes (RCITO) CORR: Progressive Reporting? S. Iqbal MUHC

2. Objectives Last Annual Report summarized Missing Data Reasons for missing data Why aim to improve Data collection/progressive or continuous reporting

3. The Canadian Organ Replacement Register (CORR) is a national information system that records, analyzes and reports the level of activity and outcomes of vital organ transplantation and renal dialysis activities. This register provides statistics that track long-term trends for dialysis, organ failure, transplantation, organ waiting list and organ donation and makes comparative data available in order to facilitate better treatment decisions.

12. Table D9. Non-Response/Unknown Values for Key Analytical Data Elements Related Incident Dialysis Patients Registered in CORR by Year, 1993 to 2002 Data Element % Non-Response/Unknowns 93949596979899000102 Sex0% Race/ethnic origin6%8%9% 13 % 14 % 15 %7% Residential postal code5%7%3%1% 0. 9%2%3%2%1% 0. 4% Diagnosis 12 % 13 % 14 % 16 % 13 % 12 % 14 % 15 % Cause of death (deceased recipients only) 17 % 18 % 21 % 22 % 19 % 21 % 23 % 22 % 23 %

13. % Non-Response/Unknowns 93949596979899000102 Presence of other serious illness 13 % 11 % 16 % 11 % 18 % 11 % 10 % 11 % 17 % 18 % Current smoker 12 % 10 % 14 % 12 % 17 % 11 %8% 10 % 13 % 14 % Coronary artery bypass/ angioplasty34%35% 31%14%8%6%8% Table D9. Non-Response/Unknown Values for Key Analytical Data Elements Related Incident Dialysis Patients Registered in CORR by Year, 1993 to 2002

14. Data Element OntarioQuebecTotal Sex0% Race/ethnic origin11%5%10% Residential postal code1%0.9%2% Diagnosis11%12%14% Cause of death (deceased recipients only)17%19%20% Non-Response/Unknown Values for Key Analytical Data Elements Related Incident Dialysis Patients Registered in CORR by Province of Treatment, 1993 to 2002

15. Missing Data Voluntary submission of data ‘meet the deadline’ No consequences in omitting data Lack of incentives Information difficult to locate from a chart review

16. Essential to improve Professionalism Information from the registry is useful only if the data is valid Important for the government to have true information for decision-making purposes Quality assurance for centres to receive centre-specific information in a timely fashion

17. Data collection Collection occurring at the provincial level and centre level Not being validated regularly Best to collect the data when the information is readily available

18. Progressive/Continuous Reporting Q monthly submission of data Incorporate data collection form with the dialysis or transplant charts Would be able to compile a report every 3 months for the centres Paper format or excel files would be acceptable for submission

19. Conclusions PD and living renal transplants need to be revived in Quebec. Growth of dialysis patients is slower, are we are selective in starting patients or better with transplantation or under-reporting Should we encourage Santé Quebec to keep a registry of dialysis – to facilitate monthly reporting