VITALISED / Evaluation of an innovative proprioceptive therapy for the treatment of hypermobile Ehlers-Danlos syndrome
Project presentation
This study aims to better characterize the hypermobile type of Ehlers-Danlos Syndrome (hEDS) and to evaluate the effectiveness of a non-drug therapeutic strategy, combining proprioceptive support by wearing compression garments (NOVATEX MEDICAL) and sensorimotor reprogramming (SMR) on a platform (HUBER 360® Evolution, LPG MEDICAL), in the treatment of the sensory-motor impairment associated with hEDS. The study involves 40 patients and 40 control subjects. Patients will be monitored for one year divided into three 4-month periods (M) : M0-M4 – standardization of medical care, M4-M8 – reprogramming sensorimotor (12 sessions) coupled with the wearing (6 hours a day) of compressive garments (experimental arm) or low-compression garments (control arm), M8-M12 – stopping the strategy and assessment of persistence (at 4 months). The patients will be assessed at each stage of the study (i.e. M0, M4, M8 and M12) on the basis of neuropsychological and perceptual tests, behavioral measurements (i.e. posture, locomotion) in virtual reality (i.e. conflict situations and attention sharing – kinematic, kinetic and electromyographic analysis), and home questionnaires covering symptoms (e.g. fatigue, anxiety, depression, pain, resilience, alexithymia) and quality of life (e.g. functional autonomy, mobility, sleep-wake rhythm).
Promoter and partners
Caen University Hospital (promoter), COMETE UMR-S 1075 INSERM-UNICAEN (PI Leslie DECKER, coordinating physician Hervé NORMAND), CIREVE Centre Interdisciplinaire de Réalité Virtuelle (experimental site), NOVATEX MEDICAL (company).
Care networks
Caen University Hospital (Center d’Evaluation et de Traitement de la Douleur, Explorations Fonctionnelles, Médecine Physique et de Réadaptation, Ophtalmology), Center de Compétence Maladies Rares de Caen, national reference center for SED, Regional Health Training Institute, SED’in association France.
Doctoral theses
Emma G. DUPUY (2015-2019, direction Leslie DECKER) and Valentin LANA (CIFRE COMETE/DevAH/NOVATEX MEDICAL, 2018-2021, direction Leslie DECKER & Julien FRÈRE).
This project is co-financed by the European Union, the Normandy Region as part of the of the ERDF/ESF 2014-2020 operational program.
