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About The Registry

What is the Rett Syndrome Global Registry?

The Registry is a fully remote, internet-accessible, parent- and caregiver-reported database to centralize your loved one’s information, track and graph health data to see changes over time, share data with doctors to improve care, help researchers make discoveries, and contribute to developing treatments for Rett syndrome.

We are in the final phases of registry development, so please check this page for updates about a launch date.

Who can participate?

The Registry is for anyone diagnosed with Rett Syndrome or anyone with an MECP2 mutation. Parents or caregivers can register their loved one ONLINE and join the Rett Syndrome Global Registry community. The Registry is not for individuals who have another disorder or for those diagnosed with MECP2 duplication syndrome.

Why is my participation important?

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.

How are my data and privacy protected?

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.

Registry Development Team

Jana Von Hehn, PhD
Registry Director & Principal Investigator
Jana Von Hehn, PhD
Rett Syndrome Research Trust
Cary Fu, MD
Clinical Lead
Cary Fu, MD
Vanderbilt University Medical Center
Bernhard Suter, MD
Clinical Lead
Bernhard Suter, MD
Texas Children’s Hospital
Liz Berry-Kravis, MD, PhD
Clinical Advisor
Liz Berry-Kravis, MD, PhD
Rush University Medical School
Eric Marsh, MD, PhD
Clinical Advisor
Eric Marsh, MD, PhD
Children’s Hospital of Philadelphia
Lindsay Swanson, MS, CGC
Genetic Counselor
Lindsay Swanson, MS, CGC
Boston Children’s Hospital
Melissa Raspa, PhD
Senior Scientist
Melissa Raspa, PhD
RTI International
Parent Committee
Parent Committee
Advocacy Groups
Advocacy Groups
Biopharma Advisory Committee
Biopharma Advisory Committee