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Participate in UCD Research!
This page shares information about joining the UCD International Patient Registry (UCDiPR) and why participation matters.
 
 
UCD International Patient Registry (UCDiPR)
UCDiPR

There is no Canadian UCD registry.

We encourage participation in the UCDiPR registry for UCD.

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If you have been affected by a urea cycle disorder or propionic acidemia, as a patient or caregiver, you can join the UCD International Patient Registry.

The Registry empowers every UCD patient and family around the world to make a difference in the fight to conquer these disorders. By joining the Registry and completing your profile survey about your own unique experience with UCD, you are contributing to a global database about the prevalence of the disorders, the accessibility of diagnosis, care, treatments, and how the disorder affects patients. The information you enter is anonymized and pooled with the anonymized data from other participants to create a centralized resource that is vital to helping researchers learn more about UCD, accelerating the development of new research and treatments, identifying issues that need research, and improving care for patients with these conditions.

The Registry allows researchers, patients, families, and clinicians to work together, sharing data and insights that accelerate progress in UCD research.
 
Real and Meaningful Data Sharing

The UCD Registry recognizes the importance of global collaboration. One of the goals of the Registry is to enable researchers from around the world to work together to speed research progress. The Registry connects all those interested in accelerating UCD research — patients, families, and researchers — with a resource that has never before been available in one place. As a participant in the Registry, you will be able to explore data and view how your answers may compare to others. You will also have access to information about new research for UCD and ways to participate in studies and clinical trials. By logging into your private, confidential, and secure profile, you can review the results of published and unpublished studies that result from the Registry.
 
Disclaimer Regarding Participation in Rare Disease Registries

Canadian PKU and Allied Disorders (CanPKU+) is proud to collaborate with various rare disease registries — including, but not limited to, this registry, 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 and may therefore be subject to foreign legislation 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.