BetterLife FSHD: A Patient-driven Health and Research Platform

Part of paid clinical trials in Randolph, Massachusetts.

Sponsor
FSHD Society
Study ID
NCT07409142
Status
Recruiting
Apply to this trial

Conditions

  • FSH
  • FSH Muscular Dystrophy
  • FSHD
  • FSHD - Facioscapulohumeral Muscular Dystrophy
  • FSHD1
  • FSHD2
  • Facioscapulohumeral Muscular Dystrophy
  • Facioscapulohumeral Muscular Dystrophy (FSHD)
  • Facioscapulohumeral Muscular Dystrophy 1
  • Facioscapulohumeral Muscular Dystrophy 2
  • Muscular Dystrophy, Facioscapulohumeral

Eligibility Criteria

Sex
ALL
Age
1 Year - N/A
Healthy Volunteers
Not accepted

Interventions

  • Observational — OTHER
    Observational study

Study Details

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

Key Dates

Start date
Aug 2, 2024
Status verified
Feb 2026
Primary completion
Jan 31, 2060
Completion
Jan 31, 2060

Study Design

Enrollment
5,000 participants (estimated)

Primary Outcome Measure

Longitudinal Health Data [ Time Frame: Assessed annually from enrollment until study completion (10 years) ]

Central Contacts

Locations (1)

FacilityCityStateZIPSite coordinators
FSHD SocietyRandolphMassachusetts02368
Kayleigh Worek, Program Manager, MS
[email protected]
781-301-6060

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