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Participate in PKU Research!

This page shares options for participating in PKU registries, including the Canadian PKU Registry and the National PKU Alliance (NPKUA) Registry.

Jump to: Canadian PKU Registry | Video | NPKUA Registry | Disclaimer

The Canadian PKU Registry

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

Currently available for pediatric patients.

Go to the Canadian Registry

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Objectives:

Document the natural history of PKU 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

About The Canadian PKU Registry (Video)

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National PKU Alliance Registry

While we encourage your participation in all registries, we are currently working hard towards our goals of the Canadian Registry for those under 18. Please consider both if you participate in this registry. They are not linked.

The National PKU Alliance: Registry for All PKU Patients

Currently available for all ages of PKU patients, worldwide.

Go to the PKU Registry

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Objectives:

Provide a registry for all ages of 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.

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Disclaimer Regarding Participation in Rare Disease Registries from other countries

Canadian PKU and Allied Disorders (CanPKU+) is proud to collaborate with various rare disease registries - including, but not limited to, the PKU Registry hosted by NPKUA - to support advancements in research and improve understanding of rare disorders.

However, we want to ensure that our community is fully informed. Please be aware that the data you choose to provide to these registries is not stored within Canadian data centres. Information submitted may be stored in facilities located outside of Canada, such as the United States, and may therefore be subject to foreign legislation, including the USA PATRIOT Act and other applicable laws.

We strongly advise our Canadian participants never to share sensitive personal information such as banking details, Social Insurance Numbers (SIN), or any similar sensitive identifiers when engaging with these registries.

CanPKU+ fully supports the responsible sharing of information to advance rare disease research and recognizes the significant value these registries bring to the community and to scientific progress. At the same time, we are committed to keeping our community informed and empowered to make the best choices about their personal data.

If you have any questions or concerns, please do not hesitate to reach out to us. We are here to help guide you with the most up-to-date information.

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