CORR et Québec: An Update on Transplantation S. Joseph Kim, MD, PhD, MHS, FRCPC Vice President,...

CORR et Québec:An Update on Transplantation

S. Joseph Kim, MD, PhD, MHS, FRCPC

Vice President, CORR Board of DirectorsSunday, 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 end-

stage 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)

Data SourcesDIALYSIS

Hospital Dialysis Centres1

N = 97

Hospital Dialysis Centres1

N = 97

CORR

TRANSPLANT

TransplantHospitals1

n = 28

SatelliteCentres1

N = 154 and21 IHFs2

Regional DialysisPrograms

ORN, BC Renal

Regional OrganProcurement Organizations

n = 6

ProvincialOrgan Procurement

Organizations1

n = 6

1 Provinces reporting include: Atlantic, QC, ON, MB, SK, AB, and BC2 IHF=Independent Health Facility

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 Transplantation2005 to 2009

Data Quality

Percentage of Deceased Donors with Complete Registration in CORR

Source: Canadian Organ Replacement Register, 2011, CIHI

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

Percentage of Transplants Reported by Centres vs. CORR – KIDNEY



2005 99.6 99.6

2006 100 98.9

2007 100 100.1

2008 101.5 99.8

2009 103.2 100

Percentage of Transplants Reported by Centres vs. CORR – LIVER



2005 100 95.9

2006 100 93.3

2007 100 95.2

2008 99.1 101.8

2009 106.7 98.3

Percentage of Transplants Reported by Centres vs. CORR – HEART



2005 100 100

2006 100 97.9

2007 97.2 94.1

2008 100 100

2009 98 99.2

Percentage of Transplants Reported by Centres vs. CORR – LUNG



2005 100 99.2

2006 100 100

2007 100 102.6

2008 100 131.8

2009 100 100

Percentage of Transplants Reported by Centres vs. CORR – PANCREAS



2005 133.3 98.9

2006 103.6 101.2

2007 105 90.1

2008 100 100

2009 100 100

Non-Response/Unknown Values in CORR for Deceased Donor Data Elements


Data Element Region 2005 2006 2007 2008 2009

SexQC 0 0.7 0 0 0

ROC 0 0 0.3 0 0

Blood TypeQC 0 0 0 0 0

ROC 0.4 0 0.6 0.3 0.6

RaceQC 8.1 0.7 0 0 0.7

ROC 50.7 49.4 51 53.3 43.8

Cause of DeathQC 0 0 0.7 0.7 0

ROC 4.3 9 7.8 4.5 5.7

Non-Response/Unknown Values in CORR for Living Donor Data Elements



SexQC 0 0 0 0 0

ROC 0 0.6 0.2 0.2 0

Blood TypeQC 11.8 1.9 2.2 7.4 7.3

ROC 9.3 4.8 0.6 0.8 1.5

Non-Response/Unknown Values in CORR for Transplant Recipient Data Elements



SexQC 0 0 0 0 0

ROC 0 0 0.1 0 0

RaceQC 2.7 1.3 2.5 3.2 2.3

ROC 29.3 28 24.4 24.2 24.4

DiagnosisQC 4.1 3.8 1.9 3.0 1.6

ROC 2.7 3.5 8.7 4.8 5.1

Cause of GFQC 39.7 34.6 35.3 40.0 32.4

ROC 44.7 57.5 62.1 46.3 56.3

Cause of Death

QC 27.5 20.6 33.3 30.0 5.0

ROC 21.7 21.1 30.7 15.2 32.6

Waiting List Statistics

Mean Waiting Times for Transplant Recipients – KIDNEY


2005 2006 2007 2008 20090

200

400

600

800

1000

1200

1400

1600

QC Candidate ROC Candidate

Me

an

Da

ys to

Tra

nsp

lan

t

Mean Waiting Times for Transplant Recipients – LIVER


2005 2006 2007 2008 20090

50

100

150

200

250

300

350

400


Me

an

Da

ys to

Tra

nsp

lan

t

Mean Waiting Times for Transplant Recipients – HEART


2005 2006 2007 2008 20090

50

100

150

200

250


Me

an

Da

ys to

Tra

nsp

lan

t

Mean Waiting Times for Transplant Recipients – LUNG


2005 2006 2007 2008 20090

100

200

300

400

500

600

700


Me

an

Da

ys to

Tra

nsp

lan

t

Mean Waiting Times for Transplant Recipients – PANCREAS


2005 2006 2007 2008 20090

200

400

600

800

1000

1200


Me

an

Da

ys to

Tra

nsp

lan

t

Number of Wait-Listed Candidates and Mortality Rate – KIDNEY


2005 2006 2007 2008 20090

200

400

600

800

1000

1200

1400

1600

1800

0

1

2

3

4

5

6

7

8

9

10

QC Candidate ROC Candidate QC Mortality ROC Mortality

Nu

mb

er

of W

aitl

ist C

an

did

ate

s

Wa

itlis

t Mo

rta

lity

Ra

te (

%)

Number of Wait-Listed Candidates and Mortality Rate – LIVER


2005 2006 2007 2008 20090

100

200

300

400

500

600

0

5

10

15

20

25

30

35

40

45

50


Nu

mb

er

of W

aitl

ist C

an

did

ate

s

Wa

itlis

t Mo

rta

lity

Ra

te p

er

Ye

ar

(%)

Number of Wait-Listed Candidates and Mortality Rate – HEART


2005 2006 2007 2008 20090

10

20

30

40

50

60

70

0

5

10

15

20

25

30

35

40

45

50


Nu

mb

er

of W

aitl

ist C

an

did

ate

s

Wa

itlis

t Mo

rta

lity

Ra

te p

er

Ye

ar

(%)

Number of Wait-Listed Candidates and Mortality Rate – LUNG


2005 2006 2007 2008 20090

20

40

60

80

100

120

140

0

5

10

15

20

25

30

35

40

45

50


Nu

mb

er

of W

aitl

ist C

an

did

ate

s

Wa

itlis

t Mo

rta

lity

Ra

te p

er

Ye

ar

(%)

Number of Wait-Listed Candidates and Mortality Rate – PANCREAS


2005 2006 2007 2008 20090

20

40

60

80

100

120

140

0

1

2

3

4

5

6

7

8

9

10


Nu

mb

er

of T

ran

spla

nt C

an

did

ate

s

Wa

itlis

t Mo

rta

lity

Ra

te p

er

Ye

ar

(%)

Sensitization Among Kidney Transplant Recipients


Quebec Rest of Canada

2005 2006 2007 2008 20090%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

PRA 0-19% PRA 20-79%PRA 80-100% Missing

2005 2006 2007 2008 20090%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%


2005 2006 2007 2008 20090%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%


Donor Activity

38

Deceased Donor Rate (PMP)by Region


2005 2006 2007 2008 20090

5

10

15

20

25

Atlantic Ontario Quebec West

Ra

te p

er

Mill

ion

Po

pu

latio

n

39

Living Donor Rate (PMP) by Region


2005 2006 2007 2008 20090

5

10

15

20

25

Atlantic Ontario Quebec West

Ra

te p

er

Mill

ion

Po

pu

latio

n

Number of Organ Donors by Donor Source


2005 2006 2007 2008 20090

100

200

300

400

500

600

Deceased Quebec Deceased Rest of Canada Living Quebec Living Rest of Canada

Nu

mb

er

of O

rga

n D

on

ors

Transplant Activity

Number of Transplants:Quebec vs. Rest of Canada


Organ Type Region 2005 2006 2007 2008 2009

Kidney - DeceasedQC 191 205 216 225 217

ROC 424 507 553 513 549

Kidney - LivingQC 49 47 46 52 40

ROC 392 440 437 426 418



Organ Type Region 2005 2006 2007 2008 2009

Liver - DeceasedQC 94 101 107 110 111

ROC 269 298 302 275 285

Liver - LivingQC < 5 5 0 < 5 < 5

ROC 57 62 71 66 56




HeartQC 40 37 35 47 50

ROC 134 141 128 117 118

LungQC 23 34 30 26 32

ROC 122 137 157 141 157

PancreasQC 24 29 21 23 16

ROC 86 83 73 96 93

Number of Transplants By Donor Age: Quebec vs. Rest of Canada



< 50 yearsQC 250 265 262 277 216

ROC 954 1,115 1,091 1,062 1,061

50 to 59 yearsQC 95 103 93 103 107

ROC 349 324 417 387 347

≥ 60 yearsQC 74 83 94 102 136

ROC 150 195 209 179 261

MissingQC < 5 0 0 0 < 5

ROC 29 28 < 5 < 5 < 5

Transplant Outcomes

Total Graft Survival, Living Donor Kidney Transplants, 2000 to 2009


3 Months 1 Year 3 Years 5 Years0

0.1

0.2

0.3

0.4

0.5

0.6

0.7

0.8

0.9

1 0.9655 0.95320.9178 0.9072

0.9813 0.97010.9404

0.8952


Su

rviv

al P

rob

ab

ility

Total Graft Survival, Deceased Donor Kidney Transplants, 2000 to 2009



0.1

0.2

0.3

0.4

0.5

0.6

0.7

0.8

0.9

1 0.94950.9264

0.88540.8334

0.95790.9302

0.8667

0.8014


Su

rviv

al P

rob

ab

ility

Total Graft Survival, Deceased Donor Liver Transplants, 2000 to 2009



0.1

0.2

0.3

0.4

0.5

0.6

0.7

0.8

0.9

1

0.8629

0.7904

0.73260.6993

0.9268

0.8705

0.81250.7677


Su

rviv

al P

rob

ab

ility

Total Graft Survival, Deceased Donor Heart Transplants, 2000 to 2009



0.1

0.2

0.3

0.4

0.5

0.6

0.7

0.8

0.9

1

0.8693 0.8517 0.8382 0.8189

0.89020.8638

0.83620.8055


Su

rviv

al P

rob

ab

ility

Total Graft Survival, Deceased Donor Lung Transplants, 2000 to 2009



0.1

0.2

0.3

0.4

0.5

0.6

0.7

0.8

0.9

1

0.8971

0.8309

0.7486

0.657

0.9061

0.846

0.711

0.6291


Su

rviv

al P

rob

ab

ility

Total Patient Survival, Living Donor Kidney Transplants, 2000 to 2009



0.1

0.2

0.3

0.4

0.5

0.6

0.7

0.8

0.9

10.9951 0.9901 0.9797 0.9729

0.9971 0.992 0.97580.9529


Su

rviv

al P

rob

ab

ility

Total Patient Survival, Deceased Donor Kidney Transplants, 2000 to 2009



0.1

0.2

0.3

0.4

0.5

0.6

0.7

0.8

0.9

1 0.9903 0.9780.944

0.9145

0.9861 0.96940.9328

0.8915


Su

rviv

al P

rob

ab

ility

Total Patient Survival, Deceased Donor Liver Transplants, 2000 to 2009



0.1

0.2

0.3

0.4

0.5

0.6

0.7

0.8

0.9

10.903

0.8506

0.7850.7537

0.9540.9022

0.84870.8042


Su

rviv

al P

rob

ab

ility

Total Patient Survival, Deceased Donor Heart Transplants, 2000 to 2009



0.1

0.2

0.3

0.4

0.5

0.6

0.7

0.8

0.9

1

0.8693 0.8542 0.8407 0.8214

0.89190.8672

0.84220.814


Su

rviv

al P

rob

ab

ility

Total Patient Survival, Deceased Donor Lung Transplants, 2000 to 2009



0.1

0.2

0.3

0.4

0.5

0.6

0.7

0.8

0.9

1

0.8971

0.8309

0.7528

0.6545

0.912

0.8536

0.7229

0.6458


Su

rviv

al P

rob

ab

ility

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]

CORR et Québec: An Update on Transplantation S. Joseph Kim, MD, PhD, MHS, FRCPC Vice President,...

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