Recruiting

Observational Study

Sponsor:

FSHD Society

Code:

NCT07409142

Conditions

FSH

FSH Muscular Dystrophy

FSHD - Facioscapulohumeral Muscular Dystrophy

FSHD1

FSHD

Eligibility Criteria

Sex: All

Age: 1+

Healthy Volunteers: Not accepted

Interventions

Observational

Study Details

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

Conditions

FSH

FSH Muscular Dystrophy

FSHD - Facioscapulohumeral Muscular Dystrophy

FSHD1

FSHD

Study ID

NCT07409142

Start date

Aug 2, 2024

Status verified date

Feb, 2026

Completion date

Jan, 2060

Anticipated

Primary completion date

Jan, 2060

Anticipated

Eligibility Criteria

Eligibility Criteria

Sex: All

Age: 1+

Healthy Volunteers: Not accepted

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

Study Design

Enrollment

5000 participants

Anticipated

Interventions and Outcome Measures

Interventions

Observational

Observational study

Primary outcome measure

  • Longitudinal Health Data [ Time Frame: Assessed annually from enrollment until study completion (10 years) ]
  • Self Reported FSHD Progression [ Time Frame: Assessed every 6 months, until study completion (10 years) ]

Central Contacts and Locations

Central contacts

Kayleigh Worek, MS

781-301-6060betterlife@fshdsociety.org

Locations

FSHD Society

Recruiting

Randolph, Massachusetts, United States, 02368

Contacts

Kayleigh Worek, Program Manager, MS

781-301-6060betterlife@fshdsociety.org

More Information

Sponsor

FSHD Society

Last update posted

Feb 20, 2026

Last verified

Feb, 2026

Keywords

  • FSHD
  • Registry
  • FSH Muscular Dystrophy
  • FSHD1
  • FSHD2
  • Facioscapulohumeral dystrophy
  • facioscapulohumeral muscular dystrophy

Trial information was received from ClinicalTrials.gov and was last updated on 2026-09-10. This information was provided to ClinicalTrials.gov by FSHD Society on 2026-02-20.