Neuromuscular diseases include more than 200 rare disorders affecting muscles or the nervous system. Functional scales assessing motor function are tools allowing to measure the evolution of motor impairment of patients with a neuromuscular disease. They are frequently used as main outcome measures in clinical trials which are currently in full development thanks to advances in genetic and drug researches. Among the available scales, the Motor Function Measure (MFM), a scale consisting of 32 items, had shown good metrological properties in terms of validity, reliability and sensitivity to change, regardless of the diagnosis and extent of motor impairment. By exploring the potential of digital technologies applied to MFM, investigators created a completion module composed of animations with different playful and informative scenarios displayed on a digital tablet. The main purpose of this project is to conduct a multicentre study to assess reliabilities of the MFM completed using the MFM-Play. Expected benefits of this project are to improve the experience and the participation of the children to who is often imposed multiple assessments during the numerous follow-up visits of clinical trials, while maintaining good metrological properties of the MFM.
Study Type
OBSERVATIONAL
Enrollment
70
Patients will completed 3 MFM during the follow-up, two times using the MFM-Play, and one without the MFM-Play Delay between each MFM completion will be 1 month ± 15 days
Centre de référence maladies neuromusculaires Hôpital Morvan - CHRU de Brest
Brest, France
Service de Rééducation Fonctionnelle Pédiatrique - L'Escale - Hôpital Femme Mère Enfant, Hospices Civils de Lyon
Bron, France
Service de Médecine Physique et de Réadaptation Pédiatrique Hôpital Couple-Enfant CHU de Grenoble
La Tronche, France
Centre de référence maladies neuromusculaires Hôpital Salengro CHU Lille
Lille, France
Consultation pluridisciplinaire MNM adulte Hôpital de la Croix Rousse, Groupement Hospitalier Nord HCL
Lyon, France
ESEAN - APF France Handicap
Nantes, France
Consultation de pédiatrie- maladie neuromusculaire Hôpital Armand Trousseau APHP
Paris, France
Service de Médecine Physique et de Réadaptation Pédiatrique Hôpital Bellevue CHU Saint Etienne
Saint-Etienne, France
Centre de référence MNM Adulte Saint Etienne - service neurologie CHU Hôpital Nord
Saint-Priest-en-Jarez, France
Centre de référence des maladies neuromusculaires enfants Hôpital des enfants CHU de Toulouse
Toulouse, France
Comparison of item scoring between 2 MFM completion.
Level of agreement between MFM item scores reported by physiotherapists during 2 different MFM completion using the MFM-Play. Level of agreement between MFM item scores reported by a same physiotherapist during a MFM completion using the MFM-Play and a MFM completed conventionally.
Time frame: 3 months
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