Washington University School of Medicine
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 Criteria: * 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 Criteria: * 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
Particapants currently receiving tofersen treatment will be referred to outpatient physical and/or occupational therapy.
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