Advance a Cure Right From Home
One of RSRT’s strengths is identifying critical research gaps and filling them. Welcome to the CURETT initiative, where we are Combining Untapped Resources to Expedite Targeted Therapeutics! This parent-powered initiative centers on sharing parent experience in high quality datasets, leveraging our loved one’s medical records and exploring objective symptom assessment tools to support therapeutic development. We have initiated the following SHARE, CARE, and WEAR studies with academic and industry partners with the expectation that they will accelerate drug development for a cure for Rett.
SHARE Study - Rett Syndrome Global Registry
The Rett Syndrome Global Registry is a place for families to SHARE their valuable day-to-day experience with Rett and turn that knowledge into power. The power to improve care. The power to accelerate research. The power to drive therapeutic development toward a cure. This parent/caregiver-driven dataset gives families new and unique tools to manage their loved one’s needs. The Rett Syndrome Global Registry is a critical component to complement the CARE Study to help therapeutic developers understand how different symptom severities in the medical record impact families at home. Parents can SHARE their experience now! The Rett Syndrome Global Registry is open for enrollment.
CARE Study - digital Natural History
The CARE (Ciitizen Aggregated health Record Extraction) Study is a place for families to consolidate all of their loved one’s medical care into one place. On behalf of families, Ciitizen collects, digitizes, and analyzes their loved one’s medical records to help create patient journeys. These journeys when aggregated tell us when symptoms start, how they change and get treated, and takes advantage of years of medical care that already exists in our loved ones’ records. Utilizing years of medical care data allows us to create a powerful digital natural history study in a fraction of the time. The CARE Study is a critical component that complements the Rett Syndrome Global Registry to help therapeutic developers understand how different symptom experiences at home correlate with the degree and type of medical care received. Join the CARE Study now! If you live outside the US and want to join please contact Monica Coenraads, monica@rsrt.org
WEAR Study - Biosensors
Being able to clearly measure changes in symptoms is really important in clinical trials, and really difficult with traditional questionnaires. Every biopharmaceutical company we engage with expresses great interest in using biosensors in clinical trials, and they are no doubt the future of trial data collection. We’re designing the WEAR study at multiple sites using biosensors to measure sleep, heart rate, breathing, and movement in Rett syndrome to create new objective ways to assess these symptoms. Biosensors collect a lot of data in a short period of time, collect data at home where results are most representative, measure events the same way every time without interpretation or bias, and allow us to measure things we can’t observe or quantify. The next WEAR study will be enrolling a small number of participants at 3 centers in the US. Stay tuned!
