usual care: For each cohort, the patient is seen at least twice, during annual visits in multidisciplinary consultation.
Study summary
Development and validation study of a prognostic score - study of prognostic performance by a prospective longitudinal multicenter cohort spread over 8 centers: 4 for the development cohort and 4 for the validation cohort).
Eligibility
Sex
ALL
Min age
18 Years
Max age
—
Healthy volunteers
No
Inclusion Criteria:
* Male or female over the age of 18
* Daily wheelchair user (more than 4 hours per day)
* Having a neuromuscular disease such as Duchenne Muscular Dystrophy or Infantile Spinal Muscular Atrophy type II
* Accompanied by an identified medical equipment provider, able to respond to the recommendations of the clinical team
* Patient informed and having signed consent.
Exclusion Criteria:
* Person who already has a seat change or FR prescription at the time of inclusion
* Having undergone surgery less than 1 year ago or a fracture
* Pregnant or breastfeeding women
* Patient under guardianship or curatorship.
Primary outcome measure(s)
Change in the seating system of the user's wheelchair — through study completion, to 12 months Any change in the seating system of the user's wheelchair within 12 months will be noted.
A change in the seating system is defined by the occurrence of at least one of these situations:
* one or more seat/back adjustments: depth, width, height
* addition/removal of postural elements
* replacement of the cushion, or backrest or headrest
* Use of electric functions of the wheelchair or on-board standing
* modification of control device of the WC.
Trial sites (1)
Facility
City
Region
Status
New technology Platform department, Raymond Poincaré Hospital, APHP
Garches
France
Recruiting
More Assistance Publique - Hôpitaux de Paris trials in France
This page summarises publicly available registry data for informational purposes — not medical advice. Eligibility is determined by each study team; patients should discuss participation with their clinician.
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