What this study is
BetterLife FSHD is a 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
What's being tested
- Observational
Intervention · OTHER
Observational study
Study details
- Sponsor
- FSHD Society
- Conditions
- FSH · FSH Muscular Dystrophy · FSHD - Facioscapulohumeral Muscular Dystrophy · FSHD1 · FSHD · FSHD2 · Facioscapulohumeral Muscular Dystrophy · Facioscapulohumeral Muscular Dystrophy 1 · Facioscapulohumeral Muscular Dystrophy 2 · Facioscapulohumeral Muscular Dystrophy (FSHD) · Muscular Dystrophy, Facioscapulohumeral
- Enrolling
- 5,000 people
- Starts
- 2024-08-02
- Est. completion
- 2060-01
- Record
- View on ClinicalTrials.gov ↗
Who can join
Age 1 Year and overSex ALLHealthy volunteers Not acceptedYou may qualify if
- 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
You can't join if
- Individuals residing outside the United States or its territories
- Unable or unwilling to provide consent, or assent, when applicable
Sign in and we'll check these against your records.Full criteria on ClinicalTrials.gov ↗
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Study locations (1)
1 openFSHD Society
Randolph, Massachusetts, United States
- Kayleigh Worek, Program Manager, MS · Contact781-301-6060 ext. 2900betterlife@fshdsociety.org
Recruiting
Study team
Sponsor
FSHD Society
Study ID Pro00079388
Principal investigator
Amanda Hill, MBA
FSHD Society
Frequently asked questions
The sponsor hasn't published answers to common questions for this trial.