FRAXA Research Foundation is now a partner in the COMBINEDBrain consortium, a non-profit organization comprising over 60 patient advocacy groups focused on rare genetic neurodevelopmental disorders. Through this collaboration, we will assist in developing new Fragile X syndrome biomarkers. By contributing samples and participating in this project, you help researchers worldwide better understand Fragile X and develop effective treatments.
COMBINEDBrain's Mission and Impact
The Consortium for Outcome Measures and Biomarkers for Neurodevelopmental Disorders (COMBINED) is committed to accelerating clinical treatments for people with rare genetic neurodevelopmental disorders. They achieve this by pooling efforts, studies, and data from member organizations.
COMBINEDBrain needs 17 more samples from individuals with Fragile X syndrome before 12/31/23. These samples will be made available to researchers worldwide, fostering collaboration and facilitating the discovery of new treatments.
Participate in Fragile X Syndrome Biomarker Research
If you or a family member is interested in participating in this groundbreaking project for Fragile X syndrome, here's what you need to know:
Any participant diagnosed with Fragile X syndrome.
COMBINEDBrain will collect blood samples (processed for plasma and a finger stick) to be stored in the COMBINEDBrain Biorepository. These samples will be available for select biomarker projects and other interested researchers.
COMBINEDBrain will come to your home!
Or, you can go to them by visiting their blood draw station at one of the conferences listed below.
There is no cost involved for eligible participants in this research study.
To get involved, please contact Katie Clapp at kclapp@fraxa.org. Thank you in advance!
Biorepository Collection Sites
- October 30-November 1, 2023, ADNP Syndrome (Los Angeles, CA)
- December 1-3, 2023, SYNGAP1 Research Fund (Orlando, FL)
- December 1-3, 2023, SLC6A1 Connect (Orlando, FL)
