Rehabilitation and Exercise for People with SOD1 ALS Who Are on Tofersen
Describes personalized rehabilitation in people with SOD1 ALS already taking tofersen.
Plain-language title generated from the registry record
Registry title: Rehabilitation and Exercise in SOD1-ALS TOfersen REcipients (RESTORE)
Key facts
- Where
- St Louis, United StatesSee the site
Where in United States
- Washington University School of MedicineSt Louis, United StatesNo longer taking part
Questions to ask the study team
- How often do I need to come in, and for how long each time?
- Are travel costs paid?
- Can I keep my own doctor?
- What happens if I want to stop?
Trial details
- Who runs it
- Washington University School of Medicine
- Trial code
- NCT05725759
- Record updated
- 9 November 2026
- Original description
The primary objective of this study is to document and describe the effects of a personalized rehabilitation program for patients with SOD1 ALS participating in the tofersen expanded access program. Participants currently receiving tofersen treatment will be referred to outpatient physical and/or occupational therapy. Participants will have an initial assessment performed and an individualized rehabilitation program will be prescribed. Each participant is encouraged to follow the prescribed recommendations that will include scheduled outpatient therapy sessions, functional assessments, and/or a home-based rehabilitation program. Functional assessments will be done at a minimum of every three months.Read full original descriptionShow less
Rehabilitation and Exercise in SOD1-ALS TOfersen REcipients (RESTORE)
The primary objective of this study is to document and describe the effects of a personalized rehabilitation program for patients with SOD1 ALS participating in the tofersen expanded access program. Participants currently receiving tofersen treatment will be referred to outpatient physical and/or occupational therapy. Participants will have an initial assessment performed and an individualized rehabilitation program will be prescribed. Each participant is encouraged to follow the prescribed recommendations that will include scheduled outpatient therapy sessions, functional assessments, and/or a home-based rehabilitation program. Functional assessments will be done at a minimum of every three months.
Inclusion: Confirmed diagnosis of ALS with an SOD1 mutation; Current enrollment in the tofersen expanded access program; Age greater than 18 years; Medically able to participate in outpatient physical therapy and/or home-based rehabilitation, as determined by the treating health care provider.
Exclusion: Any comorbidities or conditions that, in the opinion of the treating healthcare provider, would unacceptably increase the risk of participation in outpatient physical therapy and/or home-based rehabilitation.