Join | Login







HCU Logo

There is no Canadian HCU registry.

We encourage participation in the RareX registry for HCU.

Go to the Registry

Homocystinuria patients, families, and communities are excited to participate in data collection to expand and improve medical research. By coming to this site, you can begin the first step in making your patient information available to researchers. By generating the most comprehensive Homocystinuria Data Collection Program, we can accelerate research and the development of new drugs, devices, or other therapies. Only you hold the key to unlock future discoveries.

How it works:

  • No clinic visits required, and there is no cost to you
  • Patients and Caregivers retain full control over who has access to patients’ health information
  • With your consent, clinicians (doctors), researchers, and drug development companies (biopharma) can access de-identified data to aid research
  • Enrolling into the Data Collection Program requires minimal time, and you can come back to the site at your convenience to update your information
  • The best web browsers to use for the Data Collection Program are Google Chrome, Apple Safari, or Mozilla Firefox. Do not use Microsoft Edge or Internet Explorer

Why Should You Participate?

The surveys you will take in the Data Collection Program are critical to the drug and treatment development process. Our goal is to make the process as easy as possible for you. The Data Collection Program uses a collaborative technology platform powered by RARE-X. RARE-X is a program of Global Genes created to accelerate rare disease research, treatments, and cures by removing barriers for data collection and sharing. By participating, you are…

  • Informing researchers how a disease or condition changes over time
  • Enabling better data to use in clinical trials
  • Reducing the time it takes to study new medicines in clinical trials
  • Speeding up the time to get therapeutics to patients
  • Enabling the use of data as a placebo (instead of actual patients) in a clinical trial
HCU Network America RareX HCU Network Australia

 

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, RareX 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.