Acti-SMA is a multi-centric academic study. It aims to monitor the progress of patients with spinal muscular atrophy under treatment with Spinraza° or risdiplam. First, we want to quantify improvement of both ambulant and non-ambulant patients under treatment. A secondary objective would also be to identify suitable accelerometric measurements that are sensitive to change but also well correlated to other clinical scores.
Study Type
INTERVENTIONAL
Allocation
NA
Purpose
OTHER
Masking
NONE
Enrollment
30
Actimyo° is an innovative device intended to be used in a home-based environment. It is composed of two watch-like sensors, each containing a magneto-inertial sensors that record the linear acceleration, the angular velocity, the magnetic field of the movement in all directions.The two watches can be worn as wristwatch or placed near the ankle.
Centre Hospitalier Régional de la Citadelle
Liège, Liège, Belgium
Erasme Hospital - Cliniques universitaires de Bruxelles
Brussels, Belgium
National Clinical Hospital for Children Neurohabilitation "Dr Nicolae Robanescu"
Bucharest, Romania
95th centile of stride velocity
95th centile of stride velocity obtained with a magneto-inertial sensor (Actimyo°) in real-life. (meter per second).
Time frame: 39 months
50th centile of stride velocity
50th centile of stride velocity obtained with a magneto-inertial sensor (Actimyo°) in real-life (meter per second).
Time frame: 39 months
95th centile of stride length
95th centile of stride length obtained with a magneto-inertial sensor (Actimyo°) in real-life (meter).
Time frame: 39 months
50th centile of stride length
50th centile of stride length obtained with a magneto-inertial sensor (Actimyo°) in real-life (meter).
Time frame: 39 months
Upper limb function evolution in patient with SMA undergoing treatment
Upper limb function assessed with a magneto-inertial sensor (Actimyo°) in real-life.
Time frame: 39 months
6-minute walk test
The Six-Minute Walk Test is a functional walking test in which investigators assess the distance the patient can walk in six minutes (meter).
Time frame: 39 months
Dynamometric measures
Assessment of upper limb strength with myogrip and myopinch (kg).
Time frame: 39 months
10-metre walk test
The 10-metre walk test is a functional walking test in which investigators assess the time the patient take to walk 10 meters (second).
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Time frame: 39 months
rise from floor
The rise from floor is a functional test in which investigators assess the time the patient take to rise from the floor (second).
Time frame: 39 months
4-stair climb
The 4-stair climbr is a functional test in which investigators assess the time the patient take to climb a four-step staircase (second).
Time frame: 39 months
revised upper limb module (RULM)
Revised Upper Limb Module (RULM) is an assessment specifically designed for upper limb function in Spinal Muscular Atrophy.
Time frame: 39 months
Hamersmith funcitonnal motor scale (HFMS)
HFMS is a scale is specifically designed outcome measure for people affected by Spinal Muscular Atrophy.
Time frame: 39 months
motor function measure (MFM)
Motor Function Measure is a global quantitative scale created to measure the functional motor abilities of a person affected by a neuromuscular disease.
Time frame: 39 months