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Improving Data Collection in the Canadian Organ Replacement Register (CORR)

The Canadian Organ Replacement Register (CORR) captures and analyzes vital data on organ transplantation and renal dialysis activities across Canada. This document outlines the last annual report's findings, highlights the issue of missing data, and elaborates on the need for enhanced data collection practices. It discusses the importance of accurate data for treatment decisions and government policymaking, stressing the necessity of progressive and continuous reporting for improved outcomes. Recommendations include monthly data submissions and integration into existing medical records for better efficiency.

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Improving Data Collection in the Canadian Organ Replacement Register (CORR)

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  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 thatrecords, analyzes and reports the level of activity and outcomes of vital organtransplantation and renal dialysis activities. This register provides statistics that track long-termtrends for dialysis, organ failure, transplantation, organ waiting list and organdonation and makes comparative data available in order to facilitate better treatmentdecisions.

  4. 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 93 94 95 96 97 98 99 00 01 02 Sex 0% 0% 0% 0% 0% 0% 0% 0% 0% 0% Race/ethnic origin 6% 8% 9% 9% 13% 13% 14% 15% 7% 7% Residential postal code 5% 7% 3% 1% 0.9% 2% 3% 2% 1% 0.4% Diagnosis 12% 12% 13% 14% 16% 13% 13% 12% 14% 15% Cause of death (deceased recipients only) 17% 18% 18% 21% 22% 19% 21% 23% 22% 23%

  5. Presence of other serious illness Coronary artery bypass/ angioplasty 13% 34% 11% 35% 16% 35% 11% 31% 18% 14% 11% 8% 10% 6% 11% 8% 8% 17% 8% 18% Current smoker % Non-Response/Unknowns 12% 10% 14% 12% 17% 11% 8% 10% 13% 14% 93 94 95 96 97 98 99 00 01 02 Table D9. Non-Response/Unknown Values for Key Analytical Data Elements Related Incident Dialysis Patients Registered in CORR by Year, 1993 to 2002

  6. Data Element Ontario Quebec Total Sex 0% 0% 0% Race/ethnic origin 11% 5% 10% Residential postal code 1% 0.9% 2% Diagnosis 11% 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

  7. 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

  8. 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

  9. 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

  10. 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

  11. 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

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