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S. Iqbal MUHC

Le Registre C anadien des Insuffisances et des T ransplantations d'organes (RCITO) CORR: Progressive Reporting?. S. Iqbal MUHC. Objectives. Last Annual Report summarized Missing Data Reasons for missing data Why aim to improve Data collection/progressive or continuous reporting.

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S. Iqbal MUHC

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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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