Patient Registries
INFORM RARE is contributing to the co-design, enhancement, and implementation of Canadian patient registries.
Registry Values
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
Document the natural history of PKU and MPS in Canada;
Understand the experiences and priorities of Canadian patients and caregivers over time;
Facilitate the design and conduct of randomized trials;
Provide post-trial follow-up data on longitudinal patient outcomes;
Provide a platform to invite participants, with consent, to other research projects; and
Facilitate sharing of de-identified data with external researchers, with participant consent.
Governance
SMA Registry
Please visit the INFORM SMA webpage for more information.