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NCT07409142 · ClinicalTrials.gov registry record
BetterLife FSHD: A Patient-driven Health and Research Platform
A clinical trial of Facioscapulohumeral Muscular Dystrophy and FSHD, sponsored by FSHD Society.
- Recruiting
- Registry status
- 5,000
- Enrollment target
- 1
- Study location
NCT07409142: Recruiting study of Facioscapulohumeral Muscular Dystrophy and FSHD, sponsored by FSHD Society.
NCT07409142 is a study of Facioscapulohumeral Muscular Dystrophy and FSHD that is actively recruiting participants, run by FSHD Society. The registered enrollment target is 5,000 participants, above the 679-participant average among 6 other Facioscapulohumeral Muscular Dystrophy trials with a reported enrollment target (636% higher). The trial reports 1 study location across 1 state. According to ClinicalTrials.gov, the official US trial registry.
The verdict
NCT07409142, a study of Facioscapulohumeral Muscular Dystrophy and FSHD, is actively recruiting participants, sponsored by FSHD Society.
- RECRUITING
- Registry status
- 5,000 participants
- Enrollment target
- 1
- Study location
Study 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
Primary Outcome
Survey questions to capture information on demographics, health history, FSHD diagnosis (clinical diagnosis, genetic testing, family history, etc.), and FSHD symptom management (e.g., use of assistive devices, ventilation, surgery).
Conditions Studied
Interventions
- OTHER Observational
Study Locations (1)
Massachusetts
- FSHD Society - Randolph
Trial Details
| Field | Value |
|---|---|
| Enrollment Target | 5,000 participants |
| Start Date | 2024-08-02 |
| Est. Completion | 2060-01 |
What NCT07409142 shows while recruiting
NCT07409142 is an observational study that tracks outcomes without assigning an intervention. Its 5,000 participants enrollment target places it among the larger protocols in the corpus, above the 679-participant average among 6 other Facioscapulohumeral Muscular Dystrophy trials with a reported enrollment target (636% higher).
The record links to 10 conditions, with Facioscapulohumeral Muscular Dystrophy appearing as the primary indexed condition, and to 1 intervention - of which Observational is the first listed.
NCT07409142 reports a single indexed study location in Massachusetts.
Frequently Asked Questions
What is clinical trial NCT07409142 about?
NCT07409142 is a clinical study titled "BetterLife FSHD: A Patient-driven Health and Research Platform". 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...
What is the current status of trial NCT07409142?
This trial is currently recruiting. The enrollment target is 5,000 participants. The study started on 2024-08-02. Estimated completion is 2060-01.
What conditions does trial NCT07409142 study?
This clinical trial studies the following conditions: Facioscapulohumeral Muscular Dystrophy, FSHD, FSHD - Facioscapulohumeral Muscular Dystrophy, FSHD1, FSHD2.
What interventions are being tested in trial NCT07409142?
The interventions under investigation include: Observational (OTHER).
Who is sponsoring clinical trial NCT07409142?
This trial is sponsored by FSHD Society, which has 1 total clinical trials registered on ClinicalTrials.gov.
Where is trial NCT07409142 being conducted?
This trial has 1 study location across Massachusetts. Contact the study sites directly through ClinicalTrials.gov for enrollment availability.
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