Patient Registry

ACD Patient Registry

Let’s Find Treatments and Cures

Join the Patient Registry. Why register? It is important to collect critical information to understand the history and progression of CCDS, to make it easier for researchers to study, for patients and families to learn about treatments and for advocates to speak on behalf of the CCDS community.


**CTD parents- search for “Creatine” or “X-linked Creatine Transporter Deficiency” rather than “CTD”.

The ACD is proud to partner with AltaVoice Patient Insights Network (formerly Patient Crossroads Patient Registry) to provide CCDS patients with a secure patient registry for their health information. Sharing your health information through a patient registry will allow doctors and researchers to gain valuable data that can be used toward future CCDS breakthroughs and treatments.

Still have questions about joining the patient registry?

Check out these FAQ’s