GRIP on FSHD

Testing a tailored Home Exercise program to Gain insight into performance fatigability and Reduce fatigue In Patients with FSHD: THE GRIP on FSHD study

Background

Pain and fatigue are two common and disabling symptoms in FSHD. No studies in FSHD have proven to reduce pain yet. (Aerobic) exercise has proven to reduce fatigue, however, current training guidelines are generic, which can lead to overuse of injuries. We expect that a personalized training program with aerobic exercise but also strength and balance training, which is adapted to a Participants’ symptoms and wishes will have a positive effect on pain and fatigue.

Primary objectives

1. To determine the effect of a tailored exercise program using the widely implemented exercise app *Physitrack* on experienced pain and fatigue in patients with FSHD.
2. To investigate the relationship between perceived pain and fatigue, performance fatigability, disease severity, clinical phenotype, and level of activity in patients with FSHD.

Hypothesis: We expect that a personalized training program will improve pain, fatigue, and muscle strength in patients with FSHD. 

Approach: The intervention consists of a home-based individualized exercise program that includes aerobic, strength, and balance exercises. The exercises will be prescribed via the Physitrack app. 

Outcome measures are Pain (daily score), Fatigue (CIS fatigue), muscle strength (biodex), submaximal cycling test, lung function (FVC, MIP, and MEP), balance (miniBESTest), physical activity (wearable watch), and questionnaires regarding physical activity, sleep, and participation. 

Awarded grant: € 92.444

Funding agency: The French Muscular Dystrophy Association (AFM-Téléthon)