Dataset Canadian Organ Replacement Register (CORR)

Name:
Canadian Organ Replacement Register (CORR) 
Data Provider (source):

Canadian Institute for Health Information

 
Description:

The Canadian Organ Replacement Register (CORR) is a pan-Canadian information system managed by CIHI. CORR collects data from hospital dialysis programs, transplant programs, organ procurement organizations (OPOs) and independent health facilities to track patients from their first treatment for end-stage organ failure (dialysis or transplantation) to their death.

Using these statistics, CORR produces in-depth reports and analyses on long-term trends on organ transplants, organ donation and end-stage kidney disease (ESKD) in Canada. This pan-Canadian comparative data can be used to enhance treatment, patient care and research.

CORR maintains a list of contact information for dialysis, transplant and organ procurement centres across Canada. This directory includes a list of dialysis centres that accept visitors in need of dialysis services.

The CORR annual statistics provides the latest information about organ transplants, organ donation and ESKD in Canada. Refer to the annual data quality documentation for information related to the data sources, quality and accuracy of CORR reporting.

CORR collects data from provincial programs, participating dialysis centres, transplant centres and organ procurement organizations in Canada. The data is collected and reported on a calendar-year basis (January 1 to December 31). This is consistent with the practice in other international registries that report on end-stage organ failure. As a result, international comparison reporting is possible.

Patients are tracked from the first treatment stage (dialysis or transplantation) to the time of death, unless they are lost to follow-up. Only treatments provided in Canada are included in CORR reports. CORR also captures data about patients transferred outside of Canada when those facilities report the transfers. This makes it possible to record continuity of care. Information on organ donors is linked to information about those who receive the organs.

 
Purpose:
to deliver comparable and actionable information to accelerate improvements in health care, health system performance and population health across the continuum of care 
Type of Data (select all that apply):
Health Care and Health Services 
Data Collection Method (select all that apply):
Individual Level Data, Administrative Data 
Scope:
Canada-wide 
Identifiers used for linkage:
Personal Health Number, Date of birth 
Access requiredments and conditions for Researchers and Projects:

Data Access Conditions:

  • In addition to the CIHI data access condition below, requests for Quebec data are subject to review and authorization from the Quebec Privacy Commission (Commission d’accès à l’information du Québec) and the Québec Ministry of Health and Social Services (MSSS).
  • CIHI discloses health information and analyses on Canada’s health system and the health of Canadians in a manner consistent with its mandate and core functions. These disclosures typically fall into one of four categories:
    • Disclosures to parties with responsibility for the planning and management of the health care system to enable them to fulfill those functions;
    • Disclosures to parties with a decision-making role regarding health care system policy to facilitate their work;
    • Disclosures to parties with responsibility for population health research and/or analysis; and
    • Disclosures to third-party data requesters to facilitate health or health services research and/or analysis.
  • Prior to disclosure, CIHI reviews the requests to ensure that the disclosures are consistent with the above and meet the requirements of applicable legislation.
  • CIHI data disclosures are made at the highest degree of anonymity possible while still meeting the research and/or analytical purposes. This means that, whenever possible, data are aggregated.
  • Where aggregate data are not sufficiently detailed for the research and/or analytical purposes, data that have been de-identified using various de-identification processes may be disclosed to the recipient on a case-by-case basis and where the recipient has entered into a data protection agreement or other legally binding instrument with CIHI.
  • Only those data elements necessary to meet the identified research or analytical purposes may be disclosed.
  • For more information, please reference CIHI’s Privacy Policy:

Requirements for record-level data access:

  • Prior to disclosure, the recipient must sign a data protection agreement or other legally binding instrument that, at a minimum, contains the following requirements:
    • Prohibits re-identifying or contacting the individuals;
    • Prohibits linking the de-identified data unless expressly authorized in writing by CIHI;
    • Limits the purposes for which the de-identified data may be used;
    • Requires that the de-identified data be safeguarded;
    • Limits publication or disclosure to data that do not allow identification of any individual;
    • Requires the destruction of data, as specified;
    • Permits CIHI to conduct on-site privacy audits pursuant to its privacy audit program; and
    • Requires the recipient to comply with any other provision that CIHI deems necessary to further safeguard the data.
  • Prior to the disclosure of de-identified data for research purposes, the requester will provide CIHI with evidence of Research Ethics Board approval.
  • CIHI reserves the right to impose any other requirement(s) as needed on a case-by-case basis in order to maintain the confidentiality of de-identified data.
  • Prior to disclosure, program areas will evaluate the de-identified data to assess and subsequently minimize privacy risks of re-identification and residual disclosure, and to implement the necessary mitigating measures to manage residual risks.
  • CIHI will not disclose de-identified data if it is reasonably foreseeable in the circumstances that it could be utilized, either alone or with other information, to identify an individual and that, where it is reasonably foreseeable that it could be used to identify an individual, the information will be treated as personal health information.

Access process:  All data access requests can be initiated at the following CIHI webpage: https://www.cihi.ca/en/access-data-and-reports/make-a-data-request, and complete an Access Data Inquiry Form.

 
Contact:
Phone: 1-613-241-5543 Email: help@cihi.ca 
Inclusion:

Topics covered: organ replacement, transplantation, dialysis, organ donation, end stage kidney disease, organ failure

 
Exclusion:

n/a

 
Data is available from:
1981 
More Information (including references):

Data elements are collected for the following:

  • Patient-specific treatment and outcome data on end-stage kidney failure patients receiving renal replacement therapy in Canada, including:
    • Patient demographics
    • Risk factors
    • Annual clinical monitoring
    • Follow-up, including graft failures
  • Organ transplantation data, including
    • Number, type and outcome of vital organ transplants
    • Number of living and cadaveric organ donors
    • Number of patients on the transplant waiting list

CORR uses a custom coding system for diagnoses. This system was adapted from other renal registries and is based on input from the CORR advisory board. The system allows detailed clinical information relevant to chronic organ failure to be captured and analyzed. These coding systems match those used in various European dialysis/transplant registries to help facilitate international comparisons.

 
log:
[2019-02-11 13:55] Sarah Kesselring: Edited by Sarah Kesselring (skesselring)