CreatineINFO Patient Registry & Natural History Study

Welcome to the CreatineINFO Registry!


The CreatineINFO Registry serves the Cerebral Creatine Deficiency Syndromes (CCDS) community. This platform is sponsored by ACD for patients and caregivers to support research.

For more information about how to register, click here.

For Patients

Get Involved

Information collected during this study may help provide new insights and enable patients and researchers to collaborate in the CCDS community.

For Researchers

Drive Research

Are you interested in furthering your CCDS research with data from this registry? Contact us for details on how we may collaborate.