The Rett Syndrome Global Registry is a powerful way for you to advance a cure. The information you possess about your child is priceless. Put that information to work and help your child and the entire Rett community.
Power in Numbers
Imagine the power of Rett parents worldwide concentrating their knowledge and sharing it with clinicians and biopharma while improving their ability to care for their own child. We're making it happen.
Frequently Asked Questions
The Registry is for anyone diagnosed with Rett Syndrome or anyone with an MECP2 mutation. Parents or caregivers can register. The Registry is not for any other disorder or for those diagnosed with MECP2 duplication syndrome.
Your experience is a valuable resource that can help other families, as well as clinicians, researchers, and biopharma companies. Your information can collectively drive the development of more powerful symptom management techniques and tools, answer research questions, provide insights to create outcome measure tools, and improve clinical trials to be more effective and efficient.
Your loved one’s data will be coded with a unique identifier. Identifying information is kept confidential and only coded data is shared. A highly secure data storage system that meets national and international regulatory requirements for conducting clinical trials, including HIPAA, GDPR, PHIPA, and others, is used. Extra steps have also been taken to further protect your privacy.
RSRT hired a company, Avertium, to conduct an evaluation and assessment of the Registry's compliance with data security standards. Click the link below to read their positive assessment.
Watch the Webinar
Rett clinic directors Dr. Cary Fu, Dr. Bernhard Suter and Dr. Jana von Hehn (Chief Scientific Officer, RSRT) share some preliminary data from the registry and their vision for the future.
Registry Development Team
Support Committees
Parent Committee
Formed to ensure the registry could help bolster and expedite clinical trials, it defined how registry data summaries should be presented to best aid planning and support regulatory interactions with the FDA.
Advocacy Groups
We sought the advice from other NPOs to learn from their registry experience. Cystic Fibrosis Foundation, Friedreich’s Ataxia Research Alliance, Foundation for Angelman Syndrome, Loulou Foundation, and the Michael J Fox Foundation just to name a few.
Biopharma Committee
Formed to ensure the registry could help bolster and expedite clinical trials, it defined how registry data summaries should be presented to best aid planning and support regulatory interactions with the FDA.
