Rett Syndrome Registry
The IRSF Rett Syndrome Registry™ is a comprehensive study tracking the progression of Rett syndrome through expert and caregiver-reported data. This effort aims to enhance care guidelines, inform clinical trials, and accelerate the development of effective treatments. Join the registry to shape the future of Rett research and care.
What is the Rett Syndrome Registry?
The Rett Syndrome Registry is a database designed to increase the chances of clinical trial success and help bring curative treatment options to Rett families. The Registry has two components: clinical data collection and caregiver-reported information. The caregiver reports can be filled out online at each family’s convenience. Once enrolled in the Registry, the patient’s clinical data is collected through IRSF Center of Excellence physicians as part of normal clinic visits.
Participation in the Registry is voluntary, however, by doing so your family can be the key that researchers and industry need to create a world without Rett.
Why Rett?
As a rare disorder, Rett syndrome presents unique challenges that demand collaborative efforts to uncover effective solutions. By participating in the Rett Syndrome Registry, you are contributing to a dataset that captures the diversity within Rett that scientists need to guide treatment development efforts that reach everyone. This helps illuminate unmet needs and drives progress.
Uncovering New Insights into Rett Syndrome
The registry aggregates real-world data to enhance the understanding of Rett’s complexities, guiding research toward meaningful breakthroughs.
Identifying Unmet Patient Needs
Registry insights reveal gaps in care, ensuring patient-centric solutions.
Improving Clinical Trials
Data from the registry optimizes clinical trial design, increasing the likelihood of success for new treatments and potential cures.
Reducing Financial Barrier To Treatment Development
Comprehensive data accelerates treatment development, reducing costs and improving access to care.
Harnessing the Power of Data
The Rett Syndrome Registry harnesses the collective power of clinical and caregiver data, transforming it into actionable insights for researchers and clinicians. Your participation ensures every voice contributes to the shared goal of improving lives.
Accelerating Research with Clinical and Caregiver Data
Data from families and clinicians drives targeted research, shaping interventions tailored to Rett syndrome’s unique challenges. Participation ensures your experiences fuel progress. Many treatments in clinical trials today use this data to measure outcomes.
Leveraging IRSF’s Center of Excellence Network
The IRSF’s Center of Excellence (COE) Network connects families to top-tier care and research, ensuring a seamless bridge between data contribution and real-world impact.
Building on 15+ Years of Data Insights from the Natural History Study
The registry builds upon the clinical trial readiness foundation laid by the Rett Syndrome Natural History Study (NHS), leveraging insights to refine treatment strategies and guide future discoveries.
How to Participate
If your family member is already being seen at a COE, please ask your care team about participation in the Registry starting with your next clinic visit. We can also help connect you with your nearest IRSF Center of Excellence (COE) to register and begin contributing to the Registry.
Create more opportunities for progress.
Participation in the Rett Syndrome Registry fuels critical research and care advancements. Your contributions support innovations that bring hope to the Rett community.