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STUDY NAME:Motor Outcomes to Validate Evaluations in Pediatric FSHD
ABBREVIATION: MOVE Peds
STATUS: Not yet recruiting
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 Peds is to validate motor and functional outcomes in FSHD and to refine clinical trial strategies for pediatric-onset FSHD. Information from this study will be used to:
Is there any medicine given in this study?
No, MOVE Peds do not test any medicine or treatment for FSHD.
How long is the study?
If possible, each person will take part for up to 2 years.
What are the criteria to be included in the study?
To join MOVE Peds, you must:
A small number of people (~8 people) will also be enrolled who are no longer able to walk (or who take longer than 12 seconds to walk 10 meters).
What might prevent me from being in this study?
You may not be able to take part if you:
Do I need to have a genetic test to be included?
If you do not already have a genetic confirmation, a genetic test will be performed to confirm your FSHD.
Learn more about other genetic testing options.
What activities will I be asked to do?
If you join MOVE Peds, you will be asked to fill out questionnaires and perform strength and movement tests. You will also have blood draws, whole-body MRIs, and perform a breathing/lung function test.
How many study visits are there? Are they in-person or virtual?
If you join, you will attend a total of 5 study visits in person every 6 months for 24 months. The first visit may be spaced out over two days.
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.
Will I be reimbursed for travel costs?
Yes, up to $1,500 dollars is available for the first visit to cover travel, lodging and meals, and up to $1,000 for each additional visit.
If I have other children, can I bring them to the study visits?
Yes, other family members (such as siblings) can be present during the visit.
Will I receive any payment for being in the study?
Yes, you will receive $50 for each study visit completed.
Who is paying for the study?
Yes, you will receive $50 for each study visit completed.
How many volunteers are needed?
The study team is seeking 200 volunteers to take part in MOVE Peds.
Where are the study sites that are conducting the study?
There are multiple sites conducting the MOVE Peds studies in the USA and one in Australia. 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.
Getting treatments to young patients
– Springbok Analytics Leads MRI Innovations in MOVE Pediatric FSHD Clinical Study
Email Michaela Walker, the study’s project manager, with any other questions.
