Facioscapulohumeral Dystrophy
Conditions
Interventions
An individualized exercise program consisting of aerobic exercises, strength
exercises and balance exercises. The exercises will be prescribed via the
Physitrack app.
Sponsors
Radboud Universitair Medisch Centrum
Eligibility
Age
18 Years to 99 Years
Inclusion criteria
Inclusion criteria: Age > 18 years - Verified diagnosis of FSHD type 1 or 2, based on the clinical criteria established by Padberg et al. (1991). - Category A or B of the four clinical categories according to the Comprehensive Clinical Evaluation Form, these patients have the most peculiar signs of the disease - A CIS-fatigue score of >= 35 - Owning and being able to use a smartphone - Preserved ability to ambulate at the time of the selection - No cardiological or pulmonary involvement, that could interfere with physical training. - Absence of central or peripheral nervous system involvement as from neurological history and physical assessment - Absence of limb contractures and tendon retractions
Exclusion criteria
Exclusion criteria: - Use of beta-blocker medication - Presence of additional diseases likely to interfere with the measurements - Psychological-psychiatric disorders - A musculoskeletal injury that impairs exercising - Scoliosis that impairs training - Recent adjustment of any medications or medications that may impact fatigue or taking stimulants for fatigue (e.g., Modafinil, amantadine) - Current participation in another clinical investigation of a medical device or a drug; or has participated in such a study within 30 days prior to this study - Pregnant women - Patient incapable of understanding the purpose and conditions of the study, incapable of giving consent - Patient deprived of liberty or patient under guardianship
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| The chronic fatigue score assessed using the Checklist Individual Strength (CIS-fatigue) fatigue subscale and the daily observed pain score during 2 weeks are the primary endpoints. | — |
Secondary
| Measure | Time frame |
|---|---|
| Muscle function (MRC score), the Quadriceps Isometric Intermittent Fatigue test, B-FIT exercise test, Forced Vital Capacity, Mini-BESTest, physcial activity with an activity tracker, and questionnaires regarding pain, sleep, participation and physical function. | — |
Countries
Netherlands
Contacts
Public ContactN. Voet
Radboud Universitair Medisch Centrum
Outcome results
None listed