le registre canadien des insuffisances et des transplantations d'organes (rcito) corr:...
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RCITO
CORR
Le Registre Canadien des Insuffisances et des Transplantations d'organes (RCITO)
CORR: Progressive Reporting?
S. Iqbal
MUHC
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RCITO
CORR
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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RCITO
CORR
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.
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RCITO
CORR
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RCITO
CORR
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RCITO
CORR
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RCITO
CORR
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RCITO
CORR
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RCITO
CORR
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RCITO
CORR
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RCITO
CORR
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RCITO
CORR
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
Sex0
%0
%0
%0
%0
%0
%0
%0
%0
%0
%
Race/ethnic origin6
%8
%9
%9
%13%
13%
14%
15%
7%
7%
Residential postal code
5%
7%
3%
1%
0.9
%2
%3
%2
%1
%
0.4
%
Diagnosis12%
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%
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RCITO
CORR
% Non-Response/Unknowns
93 94 95 96 97 98 99 00 01 02
Presence of other serious illness
13%
11%
16%
11%
18%
11%
10%
11%
17%
18%
Current smoker12%
10%
14%
12%
17%
11%
8%
10%
13%
14%
Coronary artery bypass/
angioplasty34%
35%
35%
31%
14%
8%
6%
8%
8%
8%
Table D9. Non-Response/Unknown Values for Key Analytical Data Elements Related Incident Dialysis Patients Registered in CORR by Year, 1993 to 2002
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RCITO
CORR
Data ElementOntario
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
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RCITO
CORR
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
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RCITO
CORR
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
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RCITO
CORR
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
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RCITO
CORR
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
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RCITO
CORR
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