At a glance
- What the study gets you
- Health checks and monitoring — no treatment given
- Type of study
- Observational (no treatment given)
- Time in hospital
- Mix of remote tasks and in-person visits
- Drug or intervention
- Not specified by the sponsor
- How long the study runs
- Study runs about 85 months (dates as stated)
- About the drug or intervention
- Not specified by the sponsor
- Patient visit burden
- Not specified by the sponsor
In plain English
This study is called MOVE FSHD (Motor Outcomes to Validate Evaluations in FSHD) and looks at facioscapulohumeral muscular dystrophy (FSHD), a muscle condition. It is run by the University of Kansas Medical Center. What the study involves is not stated — ask the trial team.
Who can take part
- FSHD has been confirmed by a genetic test (type 1 or type 2).
- Or a doctor has said you have FSHD based on your symptoms and an examination, and you have a parent or child who also has FSHD.
Who may not be able to
- You are not willing or not able to give informed consent (agreement to take part after being told about the study).
- You have another health problem that the study team thinks would get in the way of taking part.
What taking part involves
- • Not stated — ask the trial team.
Time commitment: Visits, duration and what taking part involves: not stated — ask the trial team.
Plain-English summary (AI-generated) from registry data. Not eligibility advice — only the trial team can confirm whether you can take part. Use the eligibility checker to see how your health profile matches this trial.
- Type of study
- Observing health over time
- Ages
- Not specified
- Who
- All
- Number of participants
- 450
- Started
- 2020-12-15
- Last checked
- 2026-05
Plain English Summary
What is this study?
- • Testing a new treatment for fshd
- • Clinical study - 450 participants
- • The primary goal of this proposal is to collect motor and functional outcomes specific to FSHD over time
Who can take part?
- • Adults
- • Diagnosed with fshd
Where?
- • Sheffield - Sheffield Teaching Hospital
This is a simplified summary. Always discuss with your doctor before making any decisions.
About This Trial
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).
How this trial compares with your answers
Answer 2 more questions to improve match
What we know so far
Still need:
- • Tell us your age for better matching
- • Tell us your sex for better matching
Preliminary match based on your answers. Full eligibility requires on-site assessment including medical history, physical exam, and lab tests. This does not guarantee enrolment.
Eligibility at a Glance
Key info
- Age: Not specified
- Who can join: All genders
What the study is looking for
- ✓Genetically confirmed FSHD (types 1 or 2) or clinical diagnosis of FSHD with characteristic findings on exam and an...
Who cannot take part
- ✗Unwilling or unable to provide agreement to take part.
- ✗Any other medical condition which in the opinion of the investigator would interfere with study participation.
See the full criteria
Where Is This Study? (1 UK site)
Sheffield Teaching Hospital
Sheffield S10 2JF, United Kingdom
How to Get in Touch
Michaela Walker, MPH
Sponsor contactCONTACT
Leann Lewis, MSGC
Sponsor contactCONTACT