- Fragile X syndrome with full mutation
- 1 month to 65 years
- COMIRB number
- # 15-1538
Study name: Testing longitudinal outcome measures and improving minority participation in Fragile X FORWARD (component C)
Our Fragile X Clinic is part of the National Fragile X Clinics and Research Consortium (FXCRC), which is a group of clinics nationally that are working together to develop best practices for fragile X syndrome and coordinate clinical research projects across the country. This study is for participants already enrolled in the FORWARD Registry/Component A (COMIRB#08-0735).
Purpose of the study
- To help us learn about how people with FXS grow and change from childhood to adulthood
- To help us find the best tests to give people with FXS
We are seeking participants between the ages of 1 month and 65 years old confirmed diagnosis of FXS and understand either English or Spanish.
Each visit will include a variety of activities like solving problems, puzzles, talking, balance and coordination. Caregivers will complete questionnaires and an interview. Participants will come to one of the study locations once per year for three to five years.
The main study site is Children's Hospital Colorado. Study visits may be scheduled at either Children's Colorado, University of Denver or in Colorado Springs.
Each participant will receive one gift card at each annual visit.
Please email us at FORWARDstudy@childrenscolorado.org.