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SMA CARE

FOR ADULTS

Advances in preclinical and clinical trials have paved the way for novel therapeutic options for SMA patients.1

The characters shown are real patients and the required consent to use their stories has been obtained from the patients and families. Photographs are for illustrative purposes only.

CHANGES IN THE QUALITY OF CARE FOR PEOPLE LIVING WITH SMA

People living with spinal muscular atrophy (SMA) can expect better outcomes through better care options. Improved management of the disease coupled with different care options could lead to a better quality of life for people living with SMA.2,3

IMPROVING CARE AND MANAGEMENT OF SMA

A set of standards—called standards of care—are in place to support better management and care options for people living with SMA.1,3

These standards have been formulated through considerable research in recent years into the science behind SMA and the different care options available.3

79%

INCREASE

in SMA studies between 2001-2011 and 2011-2021*4,5

57

CLINICAL TRIALS

currently studying SMA*6

*Calculated based on search results on data accurate as of 22 March 2021

CARE FOR WALKERS AND SITTERS

There are different aspects to supportive care for SMA. Whether you are classified as a walker or a sitter, the best SMA management requires input from many different specialists.

This includes psychological support, tailored care plans, genetic testing and care options available to you. Click on one of the links to get an overview of what you can expect.

Summary of the latest SMA Standards of Care for SITTERS

Download in PDF

Summary of the latest SMA Standards of Care for WALKERS

Download in PDF

"When I was younger my family helped me out a lot, but now I have the independence of living on my own and my caretakers help me"

by Andrea, SMA patient

References

1. Bharucha-Goebel D, Kaufmann P. Treatment Advances in Spinal Muscular Atrophy. Curr Neurol Neurosci Rep 2017;17(11):91. doi:10.1007/s11910-017-0798-y.

2. Mercuri E, et al. Diagnosis and management of spinal muscular atrophy: Part 1: Recommendations for diagnosis, rehabilitation, orthopedic and nutritional care. Neuromuscul Disord 2018;28(2):103-115.

3. Finkel R, et al. Diagnosis and management of spinal muscular atrophy: Part 2: Pulmonary and acute care; medications, supplements and immunizations; other organ systems; and ethics. Neuromuscul Disord 2018;28(3):197-207.

4. National Center for Biotechnology Information. Spinal muscular atrophy. 2001 – 2011. Pubmed website. [online] [cited 2021 Mar 22] Available from: URL: https://pubmed.ncbi.nlm.nih.gov/?term=%28%28%28pinal%29+AND+muscular%29+AND+astrophy%29+AND+ %28%222001%2F01%2F01%22%5BDate+-+Publication%5D+%3A+%222011%2F12%2F31%22%5BDate+-+Publication%5D%29.

5. National Center for Biotechnology Information. Spinal muscular atrophy. 2011 – 2021. PubMed website. [online] [cited 2021 Mar 22] Available from: URL: https://pubmed.ncbi.nlm.nih.gov/?term=%28%28%28pinal%29+AND+muscular%29+AND+astrophy%29+AND+ %28%222011%2F01%2F01%22%5BDate+-+Publication%5D+%3A+%222021%2F12%2F31%22%5BDate+-+Publication%5D%29.

6. Search for “recruiting, active, not recruiting” studies. Spinal Muscular Atrophy. ClinicalTrials.gov. [online] [cited 2023 Jun 27]. Available from: URL: https://www.clinicaltrials.gov/search?cond=%22Spinal%20muscular%20atrophy%22&aggFilters=ages:child%20adult%20older,status:rec%20act&distance=50&page=1