ACE SMA
Research type
Research Study
Full title
A Monocentric, Prospective and Longitudinal study investigating the acceptability, feasibility, safety and efficacy of an optimized rehabilitation program for treated patients with SMA compared to the current rehabilitation program in United Kingdom: ACE SMA
IRAS ID
326914
Contact name
Laurent Servais
Contact email
Sponsor organisation
University of Oxford
Clinicaltrials.gov Identifier
Clinicaltrials.gov Identifier
IRAS , 326914
Duration of Study in the UK
1 years, 11 months, 28 days
Research summary
The aim of this project is to understand the acceptability, acceptability, safety, and potential benefit of optimising current physiotherapy practices for patients with SMA between the ages of one and ten years old, that have been treated with any of the three approved SMA therapies, post-symptomatically. Rather, Instead of only increasing the amount of hands-on physiotherapy to get closer to models applied in countries such as in Belgium/France/Germany/Italy etc, which would currently not be manageable for care teams in a UK setting, we intend to ensure a rigorous follow-up of the physiotherapy care plan by offering a goal-oriented rehabilitation with more frequent hands-on physiotherapy as well as to provide the most appropriate therapy for each individual patient. In addition, as an exploratory approach, we may also offer access to innovative rehabilitation devices at home.
If successful in changing the prescribed care regime, this project will help develop our understanding of the importance of the frequent and individualized provision of rehabilitation by physiotherapists (PTs) to patients with SMA, and consequently reduce the burden of care on the families.
REC name
London - Brent Research Ethics Committee
REC reference
24/LO/0173
Date of REC Opinion
25 Mar 2024
REC opinion
Further Information Favourable Opinion