CDA | Evidence Driven
CDA | Evidence Driven

Linking Patient and Disease Registry Data With Administrative Health Services Data

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Project Status:
Complete
Project Line:
Methods and Guidelines
Project Number:
MG0026-001

Canada’s Drug Agency, with support from our health system partners including ICES and Health Data Research Network Canada (HDRN), has published a new roadmap that will help those who manage patient and disease registries in Canada navigate the process of linking data records to help answer relevant research and policy questions and support decision-making about care for rare diseases.

The new tool consists of 2 separate documents:

  1. A guide that outlines an 8-step process to help patient and disease registry teams as they prepare to link data in registry records with administrative health services data. The guide also highlights key considerations and best practices that registry teams should keep in mind when preparing to link data.
  2. An outline of what to consider when developing or revising informed consent forms.

Files

Linking Patient and Disease Registry Data With Administrative Health Services D… View PDF
Considerations When Developing Consent Forms for Registry Participants View PDF
Last Updated : November 6, 2024