The Canadian PKU Registry: A partnership with Inform Rare and CanPKU+

Currently available for Pediatric patients.

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

The Canadian PKU Registry aims to gather valuable data to help improve research and treatments for PKU. By participating, you help further the understanding and management of PKU in the Canadian context.

How to join the registry

The National PKU Alliance: Registry for All PKU Patients

Currently available for all PKU patients, worldwide.

Objectives:

• Provide a registry for all PKU patients to share experiences and medical information.
• Help improve clinical care for people living with PKU.
• Speed up the development of treatments, therapies, and a potential cure.
• Provide an opportunity for patients to contribute to PKU-related research.
• Track PKU patients’ journeys through their treatment and life stages.

The National PKU Alliance Registry is an important resource for capturing the lived experiences and medical data of individuals with PKU. It plays a vital role in improving care, advancing research, and supporting clinical trials.