Patient Registries

INFORM RARE is contributing to the co-design, enhancement, and implementation of Canadian patient registries.

 

Registry Values

 
This image shows the patient registry values. They are: sustainability; accessibility; scalability; public benefit; benefit to patients and their families; building research capacity.
 

Metabolic Patient Registries 

Active Registries

We are excited to announce the launch of The Canadian MPS and PKU Registries! Visit the links below for more information.

The Canadian MPS Registry, in partnership with the Canadian MPS Society

The Canadian PKU Registry, in partnership with Canadian PKU & Allied Disorders Inc.

Objectives

  1. Document the natural history of PKU and MPS in Canada;

  2. Understand the experiences and priorities of Canadian patients and caregivers over time;

  3. Facilitate the design and conduct of randomized trials​;

  4. Provide post-trial follow-up data on longitudinal patient outcomes;

  5. Provide a platform to invite participants, with consent, to other research projects; and

  6. Facilitate sharing of de-identified data with external researchers, with participant consent.

Governance

 
This image describes the registry governance. It includes: participants, clinical sites, academic hospital research institute, patient organizations, funding partners, and registry platform developer/host.
 

SMA Registry

Please visit the INFORM SMA webpage for more information.