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STUDY NAME: Motor Outcomes to Validate Evaluations in FSHD (MOVE) Plus MRI and Biomarker Discovery and Validation (MOVE+)
ABBREVIATION: MOVE and MOVE+
STATUS: Enrolling
See on ClinicalTrials.govWho is conducting the study?
Dr. Jeffrey Statland at the University of Kansas Medical Center is the Principal Investigator.
What is the purpose of the study?
The purpose of MOVE is to understand how FSHD affects muscles, movement, and daily life. Information from this study will be used to:
The purpose of MOVE+ is to also find biological markers of FSHD progression that can be used in clinical trials.
Is there any medicine given in this study?
No, MOVE and MOVE+ do not test any medicine or treatment for FSHD.
How long is the study?
If possible, each person will take part for up to 3 years.
What are the criteria to be included in the study?
Anyone with a confirmed diagnosis of FSHD can join MOVE. This means you must either:
To join MOVE +, you must also:
Do I need to have a genetic test to be included?
A genetic test is not required if you have a clinical diagnosis and have a parent or child with FSHD. However, if you are the only person in your immediate family with FSHD, you would need a genetic test to take part. Learn more about genetic testing.
What activities will I be asked to do?
If you join MOVE, you will be asked to perform strength and movement tests and fill out questionnaires. You will have the option to give blood and saliva samples.
If you join MOVE+, you will give blood and saliva samples at each study visit and do a whole-body MRI and muscle biopsy.
It is possible to take part in both MOVE and MOVE+ if you wish, but you are not required to do both. You should talk to your study team to learn more about each.
How many study visits are there? Are they in-person or virtual?
If you join MOVE, you will attend at least 1 study visit per year for 3 years. Your visits will all be in-person.
If you join MOVE+, you will attend at least 3 study visits over 3 years. Your visits will all be in-person.
Will I have to stay overnight for any visits?
No, there are no overnight stays.
Will I also receive medical care during the study?
No, you will not receive any medical care as part of the study. However, if you normally receive medical care at a study site, your study visit may take place on or near the date of your regular clinic visit.
Will I have to pay for any medical expenses? Will my insurance be billed for any costs?
No, you will not have to pay for any medical expenses during the study. However, if you need to obtain a genetic test to be eligible, you or your insurance would be responsible for those costs.
Will I be reimbursed for travel costs?
No, you will not be reimbursed for travel costs.
Will I receive any payment for being in the study?
No, you will not receive any payment for being in the study.
Who is paying for the study?
MOVE and MOVE+ are funded by several pharmaceutical companies and patient advocacy organizations, including the FSHD Society.
How many volunteers are needed?
The study team is seeking 250 volunteers to take part in MOVE and 200 to take part in MOVE+, though some of these volunteers may take part in both.
Where are the study sites that are conducting the study?
There are multiple sites conducting the MOVE and MOVE+ studies in the USA, Canada, and United Kingdom, with more sites coming soon across the world! View all the current sites from the study’s clinicaltrials.gov listing.
How do I contact my study site to learn more and sign up?
View all the current sites from the study’s clinicaltrials.gov listing. Look for the “Contacts and Locations” section to view email and phone numbers for the main study contacts, as well as for each study site.
