This is a sponsored blog post by UCLA Health as part of its 2021 Los Angeles Walk & Roll Platinum Sponsorship Partnership.
If you ask a patient or their family what a FSHD treatment would do, they might tell you they dream of functional improvements such as walking becoming easier or the ability to grab heavy items from high shelves. But for many people living with FSHD, they simply hope for a treatment that would stop, or at least slow, progression of the disease. The challenge facing researchers everywhere is how they can demonstrate progression stopping or slowing in the confines of a clinical trial that takes place over mere months when FSHD naturally progresses over decades.
As a founding member of the FSHD Clinical Trial Network, UCLA joins elite medical research institutions from around the globe to answer that challenge by identifying the best tools to measure FSHD progression and hopefully improvement as well, with the M.O.V.E. Study (Motor Outcomes to Validate Evaluations in FSHD). The primary goal of the M.O.V.E. Study is to collect motor and functional outcomes specific to FSHD as part of a routine visit to the doctor. The information collected in the M.O.V.E. Study will speed up drug development by gaining a better understanding of small changes in motor function and other health outcomes (i.e. breathing) that can be measured during a visit to the doctor and how these translate into clinically meaningful changes in function to patients.
At UCLA, the M.O.V.E. Study will be led by Dr. Perry Shieh. UCLA is currently recruiting patients of all ages with FSHD 1 or FSHD 2 (confirmed with either a genetic or clinical diagnosis) to participate from Southern California. “UCLA Is thrilled to continue serving our patients with FSHD with this research. The M.O.V.E. Study’s widened criteria including both FSHD 1 and 2 patients of all ages will help us gain a more comprehensive understanding of disease progression,” says Jennifer Huynh, Clinical Research Coordinator, UCLA Department of Neurology.
The M.O.V.E. Study is designed to help make patient participation as convenient as possible, with participation scheduled to coincide with annual clinic visits. UCLA is hoping for a diverse group of patients to enroll, to ensure the data collected reflects comprehensive patient experiences. The M.O.V.E. Study includes three visits, one per year, and at each visit asks patients to participate in a physical exam, breathing, and muscle and functional test, as well as provide medical history/demographics/review of medications, and optional biomarker blood sample and saliva sample. The M.O.V.E. Study allows for participants to join other FSHD studies simultaneously, and if a treatment becomes available during the M.O.V.E. Study they can start the treatment while still being enrolled in M.O.V.E.
If you are interested in participating in the M.O.V.E. Study at UCLA, please contact:
Clinical Research Coordinator
Department of Neurology
David Geffen School of Medicine at UCLA
300 Medical Plaza, Suite B-200
Los Angeles, CA 90095
Phone: (310) 825-3264
Fax: (310) 206-7730