NCT07409142 BetterLife FSHD: A Patient-driven Health and Research Platform
| NCT ID | NCT07409142 |
| Status | Recruiting |
| Phase | — |
| Sponsor | FSHD Society |
| Condition | FSH |
| Study Type | OBSERVATIONAL |
| Enrollment | 5,000 participants |
| Start Date | 2024-08-02 |
| Primary Completion | 2060-01 |
Eligibility & Interventions
Eligibility Fast-Check
Enter your details for a quick preliminary check. This does not replace medical advice.
What to Expect as a Participant
This is an observational study. You will not receive an experimental treatment; researchers will collect data based on your existing condition or standard treatment.
This trial targets 5,000 participants in total. It began in 2024-08-02 with a primary completion date of 2060-01.
⚠ This information is for research awareness only. Always consult your physician before joining any clinical trial. Participation is voluntary and you may withdraw at any time.
Brief Summary
BetterLife FSHD is a registry platform built to support people living with FSHD. It connects patients with personalized resources, tools, and research opportunities that match their health experiences and needs. At the same time, BetterLife collects secure health and experience data from patients to support research. This data is shared with researchers to help better understand FSHD and work toward improved care, treatments, and outcomes for the community. Learn more and enroll at: www.BetterLifeFSHD.org
Eligibility Criteria
Inclusion Criteria: * Individuals with a clinical or genetic diagnosis of FSHD, or individuals with a family history of FSHD who are showing symptoms * Age 1 year or older * Residing in the United States or its territories * If age 18 or older, individual must be able and willing to provide consent * If under age 18, individual must be able and willing to provide assent, when applicable, and have a parent or legal guardian register and provide consent Exclusion Criteria: * Individuals residing outside the United States or its territories * Unable or unwilling to provide consent, or assent, when applicable
Contact & Investigator
Amanda Hill, MBA
PRINCIPAL INVESTIGATOR
FSHD Society
Frequently Asked Questions
Who can join the NCT07409142 clinical trial?
This trial is open to participants of all sexes, aged 1 Year or older, studying FSH. Full inclusion and exclusion criteria are listed in the Eligibility Criteria section. Always confirm your eligibility with the research team before applying.
Is NCT07409142 currently recruiting?
Yes, NCT07409142 is actively recruiting participants. Contact the research team at betterlife@fshdsociety.org for enrollment information.
Where is the NCT07409142 trial being conducted?
This trial is being conducted at Randolph, United States.
Who is sponsoring the NCT07409142 clinical trial?
NCT07409142 is sponsored by FSHD Society. The principal investigator is Amanda Hill, MBA at FSHD Society. The trial plans to enroll 5,000 participants.