The CreatineInfo Registry is a Patient-reported Registry and Natural History Study created by ACD and hosted by NORD (the National Organization for Rare Disorders) for furthering research and empowering the Cerebral Creatine Deficiency Syndromes (CCDS) community. This new registry is a Natural History Study that will allow CCDS families to share valuable information in an international, confidential, and safe database, and will be the primary registry for Creatine Deficiencies. Natural History Studies are longitudinal studies that aim to fill research gaps by helping medical researchers better understand how diseases progress over time.
There are many advantages to joining the registry. The CreatineInfo Registry aims to:
This registry is for all CCDS patients worldwide. Patients or caregivers with the following CCDS diagnoses can participate in this registry:
Registration is done online at creatineinfo.iamrare.org.
Getting started involves a few simple steps:
If you have any additional questions, please email email@example.com or fill out the form below. The Registry Coordinator will follow up with you promptly.