Caregivers of People with Fragile X are needed for a Research Study
- Fragile X Society
- Jul 17
- 1 min read
A health research company, Global Market Access Solutions, is conducting parent interviews to learn more about the experience of caregiving for a person with Fragile X syndrome (FXS). This research is being conducted on behalf of Shionogi, a pharmaceutical company developing a treatment for FXS.
We know that caregivers of people with Fragile X are experts in the condition and have insights that should be shared with anyone engaged in improving healthcare for people with this complex conditions.
What is the purpose of the interview?
The aims of the interviews are to better understand the experience of those living with FXS and their caregivers. The experience of those living with FXS will be explored from the caregiver perspective. The information will also help to better describe the unmet needs of caring for people with Fragile X.
How will the interviews be run?
During the interviews, which will be held online (via Zoom), you will be asked questions about the diagnosis of your family member who has Fragile X, and their general day-to-day support needs. You can keep your camera switched off during the interview. Any information you share in the interview will be anonymous.
I’m interested in being involved, what should I do?
If you are interested in participating in this project, or if you would like more information, please contact Pete Richardson at the Fragile X Society at pete@fragilex.org.uk