Motor Outcomes to Validate Evaluations in FSHD (MOVE FSHD)
Public ClinicalTrials.gov record NCT04635891. Field values are reproduced from the official study page; the official ClinicalTrials.gov record remains the source of truth for eligibility, enrollment, and contact information.
Data is sourced from official ClinicalTrials.gov public API records. Always review the official ClinicalTrials.gov record for the latest information.
Brief summary
Reproduced verbatim from the official ClinicalTrials.gov record. Not medical advice.
The primary goal of this proposal is to collect motor and functional outcomes specific to FSHD over time. By collecting measures specific to FSHD, this will help ensure the best level of clinical care is being provided. Also, the hope is to speed up drug development by gaining a better understanding of how having FSHD impacts motor function and other health outcomes (i.e. breathing, wheelchair use, etc.) and how big a change in motor function would be clinically meaningful to those with FSHD. Motor Outcomes to Validate Evaluations in FSHD (MOVE FSHD) will have approximately 450 FSHD participants followed for a minimum of 3 years. A subset of MOVE FSHD participants, approximately 200, will participate in the MOVE+ sub-study which includes whole body MRI and reachable workspace, as well as optional muscle biopsy and wearable device (US participants only).
Study identification
- NCT ID
- NCT04635891
- Recruitment status
- Recruiting
- Study type
- Observational
- Phase
- Not listed
- Enrollment
- 450 participants
Conditions and interventions
Conditions
Interventions
Not listed
Eligibility (public fields only)
- Age range
- Not listed
- Sex
- All
- Healthy volunteers
- Healthy volunteers not accepted
This page does not interpret eligibility. Detailed inclusion and exclusion criteria are on the official ClinicalTrials.gov record.
Study timeline
- Start date
- Dec 14, 2020
- Primary completion
- Nov 30, 2027
- Completion
- Dec 31, 2027
- Last update posted
- May 6, 2026
2020 – 2028
United States locations
- U.S. sites
- 16
- U.S. states
- 13
- U.S. cities
- 16
| Facility | City | State | ZIP | Site status |
|---|---|---|---|---|
| David Geffen School of Medicine at UCLA | Los Angeles | California | 90095 | Recruiting |
| Neuromuscular Disorders Program at Stanford University School of Medicine | Stanford | California | 94306 | Recruiting |
| University of Colorado Anschutz Medical Campus | Aurora | Colorado | 80045 | Recruiting |
| Univeristy of Florida Gainesville | Gainesville | Florida | 32608 | Recruiting |
| University of Iowa | Iowa City | Iowa | 52242 | Recruiting |
| Univeristy of Kansas Medical Center | Kansas City | Kansas | 66160 | Recruiting |
| Kennedy Krieger Institute | Baltimore | Maryland | 21205 | Recruiting |
| University of Rochester Medical Center | Rochester | New York | 14642 | Recruiting |
| Duke University - Lenox Baker Children's Hospital | Durham | North Carolina | 27705 | Recruiting |
| The Ohio State University Medical Center | Columbus | Ohio | 43221 | Recruiting |
| Austin Neuromuscular Center | Austin | Texas | 78759 | Recruiting |
| Univeristy of Texas Southwestern Medical Center | Dallas | Texas | 75390 | Recruiting |
| University of Texas Health San Antonio | San Antonio | Texas | 78229 | Not yet recruiting |
| University of Utah | Salt Lake City | Utah | 84132 | Recruiting |
| Virginia Commonwealth University | Richmond | Virginia | 23219 | Recruiting |
| University of Washington Medical Center | Seattle | Washington | 98195 | Recruiting |
Site contact phone numbers, emails, and investigator names are intentionally not displayed here. Open the official ClinicalTrials.gov record for site contact information.
Non-U.S. locations
This page focuses on the U.S. directory. The official record also lists 5 non-U.S. sites.
About this trial record page
- What this page shows
- Public field values for ClinicalTrials.gov record NCT04635891, including study identification, conditions, interventions, eligibility (age, sex, healthy volunteer), timeline, and U.S. site list.
- What this page does not do
- No medical advice, eligibility judgments, treatment recommendations, study quality scoring, or AI-generated medical summaries. No site contact phone numbers, emails, or investigator names.
- Where the data comes from
- Sourced from the official ClinicalTrials.gov public API. The official record is the source of truth.
- Last refresh
- Last update posted May 6, 2026 · Synced Sep 5, 2026
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Open the official record
The complete protocol, eligibility criteria, and contact information for NCT04635891 live on ClinicalTrials.gov.