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CORR et Québec:
An Update on Transplantation
S. Joseph Kim, MD, PhD, MHS, FRCPC
Vice President, CORR Board of Directors
Sunday, October 16th, 2011
Outline
• Introduction
• Purpose
• History
• Organization
• Data (scope, elements, sources, quality)
• Trends in transplantation, 2005 to 2009
• Future directions
Introduction
• Canadian Organ Replacement Register (CORR) is
the national information system for end-stage renal
disease and solid organ transplantation
• Day-to-day operations currently based at the
Canadian Institute for Health Information (CIHI)
• Mission: To provide a national database on vital
organ replacement therapy in Canada, with the goal
of enhancing treatment, research, and patient care
• CORR Board of Directors is responsible for
providing strategic advice to CIHI re: the register
Purpose
• Collect, process and analyze summary data on endstage organ failure and organ transplants
• Provide a pan-Canadian view on end-stage organ failure
statistics for comparative analyses
• Increase the availability of comparative material to
facilitate development of treatment algorithms
• Provide statistics on long-term trends that can be used
for program and system planning
• Provide a feedback mechanism to facilities, a quality
assurance function for treatment, and a national
standard for comparison
History
• 1972 – CORR began as a renal failure registry under the
leadership of Dr. Arthur Shimizu
• 1973 – Registry transferred to Statistics Canada in
collaboration with Kidney Foundation of Canada (KFOC)
• 1974 – First report produced
• Mid-1970’s – Detailed reports of dialysis and kidney
transplantation activity continued
• 1980 – Registry revived after few years of inactivity under new
partnership between KFOC, Health and Welfare Canada, and
Statistics Canada
• 1981 – Data collection re-initiated on all chronic renal failure
patients on RRT (data previously collected were lost)
History (cont’d)
• 1985 – Advisory Committee on Institutional and Medical
Services (ACIMS) recommended including data on extra-renal
organ transplants in registry
• 1987 – Hospital Medical Records Institute (HMRI) awarded
contract to operate new expanded registry
• 1988 – CORR started collecting data on extra-renal organ
transplants
• 1990 – CORR incorporated
• 1994 – Merger of HMRI and sections of Health Canada and
Statistics Canada to form the Canadian Institute for Health
Information (CIHI)
• 1995 – CORR became fully integrated within CIHI
Organization
• CIHI houses and operates the CORR
– President & CEO: John Wright
– Director, Clinical Registries: Greg Webster
– Manager, Clinical Registries: Claire Marie Fortin
– Program Lead: Bob Williams
– Analysts: Frank Ivis and Yingbo Na
• CORR Board functions in an advisory role to CIHI
providing strategic advice on scientific and health
policy matters as well as representing the interests
of the renal and organ transplantation communities
CORR Board of Directors
• Louise Moist
President
• Joseph Kim
Vice President
Canadian Society of Transplantation
• John Gill
Past President
• Joanne Kappel
Canadian Society of Nephrology
• Brenda Hemmelgarn
Canadian Society of Nephrology
• Rosalie Starzomski
Canadian Society of Nephrology
Nurses and Technicians
• Kim Young
Canadian Blood Services
• Semeena Iqbal
Quebec Society of Nephrology
• Charles Poirier
Quebec Society of Transplantation
• Peter Hoult
Kidney Foundation of Canada,
Secretary/Treasurer
Scope
• CORR is patient-oriented
– Followed until death or lost to follow-up
• Captures information on:
– Treated patients
– Specific treatments
– Organ donors
– Aggregate transplant waiting list statistics from OPOs
– Transplant and dialysis facilities
• Access to Kidney Transplantation Project
– Referral and wait-listing activity at patient-level
Data Elements
• Nearly 600 data elements in CORR database
– Patient demographics (DOB, sex, race/ethnicity,
postal code)
– Diagnosis and co-morbidities
– Treatment specific information (HD, PD, solid organ
transplants)
– Treatment changes (hospital transfers, modality
changes, dialysis withdrawal)
– Outcomes (organ failures, death)
– Donor information (demographics, organs donated
and transplanted)
DIALYSIS
Data Sources
Hospital
Dialysis
Centres1
N = 97
Transplant
Hospitals1
n = 28
Satellite
Centres1
N = 154 and
21 IHFs2
Provincial
Organ Procurement
Organizations1
n=6
CORR
Regional Dialysis
Programs
ORN, BC Renal
1
TRANSPLANT
Provinces reporting include: Atlantic, QC, ON, MB, SK, AB, and BC
2 IHF=Independent Health Facility
Regional Organ
Procurement
Organizations
n=6
Data Quality
• CORR is a voluntary registry (i.e., data submission is not
provincially or nationally mandated)
• In 2008, coverage of transplants in CORR was 98.5%
vs. coverage of transplants in Discharge Abstracts
Database
• In 2009, 99.7% of aggregate data on kidney transplant
counts from OPOs reflected patient-level data in CORR
• From 2000 to 2009, CORR failed to capture only 77 of
9,344 deceased and living donors
• From 2000 to 2009, item non-response ≥ 10% occurred
in race, causes of graft failure or death, and various
comorbid conditions (low to moderate SN, high SP)
• Medical records from 1,125 incident dialysis patients
registered in CORR from 2005 to 2006
• Agreement > 97% for HCN, DOB, sex and 71% (47% to 89%)
for primary renal disease
• Comorbid conditions generally under-reported with SN
ranging from 0.47 (95% CI, 0.38 to 0.55) for PVD to 0.89
(95% CI, 0.80 to 0.92) for HTN
• Specificity for comorbid conditions > 93% except for HTN
• Adjusted hazard ratios for death similar whether calculated
with data from CORR or medical record
Moist et al. Clin J Am Soc Nephrol 2011;6:813-8.
Trends in
Transplantation
2005 to 2009
Data Quality
Percentage of Deceased Donors with
Complete Registration in CORR
Year
Quebec
Rest of Canada
2005
99.3
99.3
2006
100
97.9
2007
100
97.7
2008
100
98.5
2009
100
100
Source: Canadian Organ Replacement Register, 2011, CIHI
Percentage of Transplants Reported by
Centres vs. CORR – KIDNEY
Year
Quebec
Rest of Canada
2005
99.6
99.6
2006
100
98.9
2007
100
100.1
2008
101.5
99.8
2009
103.2
100
Source: Canadian Organ Replacement Register, 2011, CIHI
Percentage of Transplants Reported by
Centres vs. CORR – LIVER
Year
Quebec
Rest of Canada
2005
100
95.9
2006
100
93.3
2007
100
95.2
2008
99.1
101.8
2009
106.7
98.3
Source: Canadian Organ Replacement Register, 2011, CIHI
Percentage of Transplants Reported by
Centres vs. CORR – HEART
Year
Quebec
Rest of Canada
2005
100
100
2006
100
97.9
2007
97.2
94.1
2008
100
100
2009
98
99.2
Source: Canadian Organ Replacement Register, 2011, CIHI
Percentage of Transplants Reported by
Centres vs. CORR – LUNG
Year
Quebec
Rest of Canada
2005
100
99.2
2006
100
100
2007
100
102.6
2008
100
131.8
2009
100
100
Source: Canadian Organ Replacement Register, 2011, CIHI
Percentage of Transplants Reported by
Centres vs. CORR – PANCREAS
Year
Quebec
Rest of Canada
2005
133.3
98.9
2006
103.6
101.2
2007
105
90.1
2008
100
100
2009
100
100
Source: Canadian Organ Replacement Register, 2011, CIHI
Non-Response/Unknown Values in CORR for
Deceased Donor Data Elements
Data Element
Sex
Blood Type
Race
Cause of Death
Region
2005
2006
2007
2008
2009
QC
0
0.7
0
0
0
ROC
0
0
0.3
0
0
QC
0
0
0
0
0
ROC
0.4
0
0.6
0.3
0.6
QC
8.1
0.7
0
0
0.7
ROC
50.7
49.4
51
53.3
43.8
QC
0
0
0.7
0.7
0
ROC
4.3
9
7.8
4.5
5.7
Source: Canadian Organ Replacement Register, 2011, CIHI
Non-Response/Unknown Values in CORR for
Living Donor Data Elements
Data Element
Sex
Blood Type
Region
2005
2006
2007
2008
2009
QC
0
0
0
0
0
ROC
0
0.6
0.2
0.2
0
QC
11.8
1.9
2.2
7.4
7.3
ROC
9.3
4.8
0.6
0.8
1.5
Source: Canadian Organ Replacement Register, 2011, CIHI
Non-Response/Unknown Values in CORR for
Transplant Recipient Data Elements
Data Element
Sex
Race
Diagnosis
Cause of GF
Cause of
Death
Region
2005
2006
2007
2008
2009
QC
0
0
0
0
0
ROC
0
0
0.1
0
0
QC
2.7
1.3
2.5
3.2
2.3
ROC
29.3
28
24.4
24.2
24.4
QC
4.1
3.8
1.9
3.0
1.6
ROC
2.7
3.5
8.7
4.8
5.1
QC
39.7
34.6
35.3
40.0
32.4
ROC
44.7
57.5
62.1
46.3
56.3
QC
27.5
20.6
33.3
30.0
5.0
ROC
21.7
21.1
30.7
15.2
32.6
Source: Canadian Organ Replacement Register, 2011, CIHI
Waiting List Statistics
Mean Waiting Times for Transplant
Recipients – KIDNEY
1600
Mean Days to Transplant
1400
1200
1000
800
600
400
200
0
2005
2006
2007
QC Candidate
2008
2009
ROC Candidate
Source: Canadian Organ Replacement Register, 2011, CIHI
Mean Waiting Times for Transplant
Recipients – LIVER
Mean Days to Transplant
400
350
300
250
200
150
100
50
0
2005
2006
2007
QC Candidate
2008
2009
ROC Candidate
Source: Canadian Organ Replacement Register, 2011, CIHI
Mean Waiting Times for Transplant
Recipients – HEART
Mean Days to Transplant
250
200
150
100
50
0
2005
2006
2007
QC Candidate
2008
2009
ROC Candidate
Source: Canadian Organ Replacement Register, 2011, CIHI
Mean Waiting Times for Transplant
Recipients – LUNG
700
Mean Days to Transplant
600
500
400
300
200
100
0
2005
2006
2007
QC Candidate
2008
2009
ROC Candidate
Source: Canadian Organ Replacement Register, 2011, CIHI
Mean Waiting Times for Transplant
Recipients – PANCREAS
1200
Mean Days to Transplant
1000
800
600
400
200
0
2005
2006
2007
QC Candidate
2008
2009
ROC Candidate
Source: Canadian Organ Replacement Register, 2011, CIHI
1800
10
1600
9
1400
8
7
1200
6
1000
5
800
4
600
3
400
2
200
1
0
Waitlist Mortality Rate (%)
Number of Waitlist Candidates
Number of Wait-Listed Candidates and
Mortality Rate – KIDNEY
0
2005
QC Candidate
2006
2007
ROC Candidate
2008
QC Mortality
2009
ROC Mortality
Source: Canadian Organ Replacement Register, 2011, CIHI
Number of Wait-Listed Candidates and
Mortality Rate – LIVER
600
50
45
40
35
400
30
300
25
20
200
15
10
100
5
0
Waitlist Mortality Rate per Year (%)
Number of Waitlist Candidates
500
0
2005
2006
QC Candidate
2007
ROC Candidate
2008
QC Mortality
2009
ROC Mortality
Source: Canadian Organ Replacement Register, 2011, CIHI
Number of Wait-Listed Candidates and
Mortality Rate – HEART
70
50
45
40
50
35
30
40
25
30
20
15
20
10
10
5
0
0
2005
QC Candidate
2006
2007
ROC Candidate
2008
QC Mortality
2009
ROC Mortality
Source: Canadian Organ Replacement Register, 2011, CIHI
Waitlist Mortality Rate per Year (%)
Number of Waitlist Candidates
60
Number of Wait-Listed Candidates and
Mortality Rate – LUNG
140
50
45
40
100
35
30
80
25
60
20
15
40
10
20
5
0
0
2005
2006
QC Candidate
2007
ROC Candidate
2008
QC Mortality
2009
ROC Mortality
Source: Canadian Organ Replacement Register, 2011, CIHI
Waitlist Mortality Rate per Year (%)
Number of Waitlist Candidates
120
Number of Wait-Listed Candidates and
Mortality Rate – PANCREAS
140
10
9
8
100
7
6
80
5
60
4
3
40
2
20
1
0
0
2005
2006
QC Candidate
2007
ROC Candidate
2008
QC Mortality
2009
ROC Mortality
Source: Canadian Organ Replacement Register, 2011, CIHI
Waitlist Mortality Rate per Year (%)
Number of Transplant Candidates
120
Sensitization Among Kidney Transplant
Recipients
Quebec
Rest of Canada
100%
100%
90%
90%
80%
80%
70%
70%
60%
60%
50%
50%
40%
40%
30%
30%
20%
20%
10%
10%
0%
2005
0%
2005
PRA 0-19%
2006
2007
PRA 20-79%
2008
PRA 80-100%
2009
Missing
2006
2007
2008
PRA 0-19%
PRA 20-79%
PRA 80-100%
Missing
2009
Source: Canadian Organ Replacement Register, 2011, CIHI
Donor Activity
Deceased Donor Rate (PMP)
by Region
Rate per Million Population
25
20
15
10
5
0
2005
2006
Atlantic
2007
Ontario
Quebec
2008
2009
West
Source: Canadian Organ Replacement Register, 2011, CIHI
38
Living Donor Rate (PMP) by Region
Rate per Million Population
25
20
15
10
5
0
2005
2006
Atlantic
2007
Ontario
Quebec
2008
2009
West
Source: Canadian Organ Replacement Register, 2011, CIHI
39
Number of Organ Donors by Donor Source
Number of Organ Donors
600
500
400
300
200
100
0
2005
Deceased Quebec
2006
2007
Deceased Rest of Canada
2008
Living Quebec
2009
Living Rest of Canada
Source: Canadian Organ Replacement Register, 2011, CIHI
Transplant Activity
Number of Transplants:
Quebec vs. Rest of Canada
Organ Type
Region
2005
2006
2007
2008
2009
QC
191
205
216
225
217
ROC
424
507
553
513
549
QC
49
47
46
52
40
ROC
392
440
437
426
418
Kidney - Deceased
Kidney - Living
Source: Canadian Organ Replacement Register, 2011, CIHI
Number of Transplants:
Quebec vs. Rest of Canada
Organ Type
Region
2005
2006
2007
2008
2009
QC
94
101
107
110
111
ROC
269
298
302
275
285
QC
<5
5
0
<5
<5
ROC
57
62
71
66
56
Liver - Deceased
Liver - Living
Source: Canadian Organ Replacement Register, 2011, CIHI
Number of Transplants:
Quebec vs. Rest of Canada
Data Element
Region
2005
2006
2007
2008
2009
QC
40
37
35
47
50
ROC
134
141
128
117
118
QC
23
34
30
26
32
ROC
122
137
157
141
157
QC
24
29
21
23
16
ROC
86
83
73
96
93
Heart
Lung
Pancreas
Source: Canadian Organ Replacement Register, 2011, CIHI
Number of Transplants By Donor Age:
Quebec vs. Rest of Canada
Data Element
Region
2005
2006
2007
2008
2009
QC
250
265
262
277
216
ROC
954
1,115
1,091
1,062
1,061
QC
95
103
93
103
107
ROC
349
324
417
387
347
QC
74
83
94
102
136
ROC
150
195
209
179
261
QC
<5
0
0
0
<5
ROC
29
28
<5
<5
<5
< 50 years
50 to 59 years
≥ 60 years
Missing
Source: Canadian Organ Replacement Register, 2011, CIHI
Transplant Outcomes
Total Graft Survival, Living Donor Kidney
Transplants, 2000 to 2009
1
0.9655
0.9813
0.9532
0.9701
0.9178
0.9404
0.9
0.9072
0.8952
Survival Probability
0.8
0.7
0.6
0.5
0.4
0.3
0.2
0.1
0
3 Months
1 Year
Quebec
3 Years
5 Years
Rest of Canada
Source: Canadian Organ Replacement Register, 2011, CIHI
Total Graft Survival, Deceased Donor Kidney
Transplants, 2000 to 2009
1
0.9495
0.9579
0.9264
0.9302
0.8854
0.9
0.8667
0.8334
0.8014
Survival Probability
0.8
0.7
0.6
0.5
0.4
0.3
0.2
0.1
0
3 Months
1 Year
Quebec
3 Years
5 Years
Rest of Canada
Source: Canadian Organ Replacement Register, 2011, CIHI
Total Graft Survival, Deceased Donor Liver
Transplants, 2000 to 2009
1
0.9
0.9268
0.8125
0.7904
0.8
Survival Probability
0.8705
0.8629
0.7677
0.7326
0.7
0.6993
0.6
0.5
0.4
0.3
0.2
0.1
0
3 Months
1 Year
Quebec
3 Years
5 Years
Rest of Canada
Source: Canadian Organ Replacement Register, 2011, CIHI
Total Graft Survival, Deceased Donor Heart
Transplants, 2000 to 2009
1
0.9
0.8693
0.8902
0.8517
0.8638
0.8382
0.8362
0.8189
0.8055
Survival Probability
0.8
0.7
0.6
0.5
0.4
0.3
0.2
0.1
0
3 Months
1 Year
Quebec
3 Years
5 Years
Rest of Canada
Source: Canadian Organ Replacement Register, 2011, CIHI
Total Graft Survival, Deceased Donor Lung
Transplants, 2000 to 2009
1
0.9
0.8971
0.9061
0.8309
0.846
0.8
0.7486
Survival Probability
0.711
0.7
0.657
0.6291
0.6
0.5
0.4
0.3
0.2
0.1
0
3 Months
1 Year
Quebec
3 Years
5 Years
Rest of Canada
Source: Canadian Organ Replacement Register, 2011, CIHI
Total Patient Survival, Living Donor Kidney
Transplants, 2000 to 2009
1
0.9951
0.9971
0.9901
0.992
0.9797
0.9758
0.9729
0.9529
0.9
Survival Probability
0.8
0.7
0.6
0.5
0.4
0.3
0.2
0.1
0
3 Months
1 Year
Quebec
3 Years
5 Years
Rest of Canada
Source: Canadian Organ Replacement Register, 2011, CIHI
Total Patient Survival, Deceased Donor
Kidney Transplants, 2000 to 2009
1
0.9903
0.9861
0.978
0.9694
0.944
0.9328
0.9
0.9145
0.8915
Survival Probability
0.8
0.7
0.6
0.5
0.4
0.3
0.2
0.1
0
3 Months
1 Year
Quebec
3 Years
5 Years
Rest of Canada
Source: Canadian Organ Replacement Register, 2011, CIHI
Total Patient Survival, Deceased Donor Liver
Transplants, 2000 to 2009
1
0.954
0.903
0.9
0.9022
0.8506
0.785
0.8
Survival Probability
0.8487
0.8042
0.7537
0.7
0.6
0.5
0.4
0.3
0.2
0.1
0
3 Months
1 Year
Quebec
3 Years
5 Years
Rest of Canada
Source: Canadian Organ Replacement Register, 2011, CIHI
Total Patient Survival, Deceased Donor Heart
Transplants, 2000 to 2009
1
0.9
0.8693
0.8919
0.8542
0.8672
0.8407
0.8422
0.8214
0.814
Survival Probability
0.8
0.7
0.6
0.5
0.4
0.3
0.2
0.1
0
3 Months
1 Year
Quebec
3 Years
5 Years
Rest of Canada
Source: Canadian Organ Replacement Register, 2011, CIHI
Total Patient Survival, Deceased Donor Lung
Transplants, 2000 to 2009
1
0.9
0.8971
0.912
0.8309
0.8536
Survival Probability
0.8
0.7528
0.7229
0.7
0.6545
0.6458
0.6
0.5
0.4
0.3
0.2
0.1
0
3 Months
1 Year
Quebec
3 Years
5 Years
Rest of Canada
Source: Canadian Organ Replacement Register, 2011, CIHI
Future Directions
• Access to kidney transplantation feasibility study
(WAVE project)
• Comprehensive transplant data element review
• eCORR electronic data entry
• Re-evaluate and revise data request process to
improve access to CORR data for investigators
• CORR Board renewal
• Strengthen partnerships with stakeholder groups
including CBS, CST, CSN, KFOC, OPOs, and
provincial renal agencies
Questions?
[email protected]