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The FSH Society is participating in an international workshop on FSHD patient registries later this week. We would like to share the patient and family perspective on registries with the experts attending the workshop. Not sure what a registry is? No worries! By taking the survey, you will learn. (If you are not an FSHD patient or family member, please disregard this survey.)
Current registry data is valuable to researchers, but we need to ensure that data of value to patients is also collected, so we need to hear from you. Including information that patients find helpful and interesting will increase the value of future registries, and give researchers insight into patient needs and desires.
Please take a few minutes to respond to our survey. Deadline, 11:59PM on Tuesday November 15. We appreciate your help!
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