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