CreatineINFO Registry

The CreatineINFO Registry collects patient- and caregiver-reported disease-specific natural history data about individuals with Cerebral Creatine Deficiency Syndromes (CCDS), with the goal of improving the understanding of CCDS and informing treatment development. Registry questionnaires were built from common data element standards and may cover the following topics:

• Socio-demographics
• Medical history and diagnostics
• Treatment and disease progression
• Management of care
• Quality of life
• Clinical trial participation
• Genetic and laboratory reports

We are interested in partnering with you! If you would like access to the CreatineINFO Registry data for a research project, please contact our registry administrator at registry@creatineinfo.org for more information. Access to the CreatineINFO Registry data is contingent upon project approval by the CreatineINFO Registry Oversight Board.