The National Fragile X Foundation, with the help of several professionals, has secured agreement to obtain STX209 trial participant data through a reconsent process. Science cannot move forward without your participation, so we have partnered with Dr. Elizabeth Berry-Kravis to create an eConsent option for bringing your STX209 data home to the NFXF Data Repository.
Who Can Participate?
Only those individuals who had previously participated in the STX209 trials. The participant and/or a parent, caregiver, or legally authorized representative must be available to provide consent.
Providing consent for data transfer is completed via an online form (the secure database is provided by Rush University), which asks a few questions about yourself and which study site you went to when you participated in the STX209 studies. This should take no more than 15 minutes. If needed, you’ll be able to save your work and come back to it if you’re not able to complete it one sitting.
What Happens Next?
Once completed, your past STX209 data will be transferred to the NFXF Data Repository, where the now de-identified clinical and biological data may be queried by other researchers conducting projects in Fragile X.
Registrants may also be contacted about research studies they may be eligible to participate in, including future treatment studies.
Please email firstname.lastname@example.org with questions.