New registry! The ACD is proud to partner with the National Organization for Rare Disorders (NORD) to provide a new Natural History Study (NHS) Patient-reported Registry for CCDS.
What is the CreatineInfo Registry?
Why join the CreatineInfo Registry?
There are many advantages to joining the registry. The CreatineInfo Registry aims to:
- Improve understanding of the natural history and impact of CCDS in patients’ lives.
- Provide valuable information to doctors and scientists to help them develop treatments and improve patient outcomes.
- Assist ACD with representing the CCDS community accurately.
- Share community-reported recommendations and standards of care.
Who can participate?
This registry is for all CCDS patients worldwide. Patients or caregivers with the following CCDS diagnoses can participate in this registry:
- Creatine Transporter Deficiency (CTD)
- Guanidinoacetate Methyltransferase Deficiency (GAMT)
- Arginine: Glycine Amidinotransferase Deficiency (AGAT)
How do I register?
Registration is done online at creatineinfo.iamrare.org beginning March 15, 2021.
Getting started involves a few simple steps:
- Visit creatineinfo.iamrare.org and click “Register” under “Join the Registry”
- Create an account. With one account, you can add multiple participants, as needed. Each participant will have their own surveys to take.
- Provide consent for your participation and start completing the registry questionnaires.
We are on this journey together!
When patient stories come together, they have the power to improve understanding of rare diseases, like CCDS, and to further research into new and better treatments that can change lives
If you have any questions, we are here for you.
Contact [email protected], and the Registry Coordinator will follow up with you promptly.