Care for adults

CHANGES IN THE QUALITY OF CARE FOR PEOPLE LIVING
WITH SMA

For people living with SMA, health outcomes correlate with patient care and management of their disease.^1,2 A range of care options and careful management of SMA can result in improved quality of life, compared to if left untreated.^2–4

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.

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.^2,3

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

84%

INCREASE

in SMA publications between 2001-2011 and 2011-2021^5,6*

CLINICAL TRIALS

currently studying SMA^7*

CARE FOR WALKERS AND SITTERS

There are different aspects to supportive care for SMA. Whether you are classified as a walker or a sitter, SMA management should include input from many different specialists.^1,2

This can include 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

Ask your doctor for further information on managing SMA and specialist referrals.

Find a Specialist Clinic

Disease Stabilisation

Managing SMA

CONNECT

to learn more about about how to be part of the SMA community

Discover Communities

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.

References

Rad N, et al. Management of Spinal Muscular Atrophy in the Adult Population. Muscle Nerve 2022;65(5):498-507.
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.
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.
Kaufmann P, et al. Prospective cohort study of spinal muscular atrophy types 2 and 3. Neurology 2012;79(18):1889-1897.
National Center for Biotechnology Information. Spinal Muscular Atrophy. Pubmed website. Available at https://pubmed.ncbi.nlm.nih.gov/? term=%28%28%28spinal%29+AND+muscular%29+AND+atrophy%29&filter=years.2001-2011&timeline=expanded (Accessed July 2022).
National Center for Biotechnology Information. Spinal Muscular Atrophy. Pubmed website. Available at https://pubmed.ncbi.nlm.nih.gov/? term=%28%28%28spinal%29+AND+muscular%29+AND+atrophy%29&filter=years.2001-2021&timeline=expanded (Accessed July 2022).
Search for 'Recruiting, Active, not recruiting. Enrolling by invitation Studies. Spinal Muscular Atrophy. ClinicalTrials.gov. https:// www.clinicaltrials.gov/ct2/results cond=%22Spinal+muscular+atrophy%22&term=&type=&rslt=&recrs=b&recrs=a&recrs=f&recrs=d&age_ v=&gndr=&intr=&titles=&outc=&spons=&lead=&id=&cntry=&state=&city=&dist=&locn=&rsub=&strd_s=&strd_e=&prcd_s=&prcd _e=&sfpd_s=&sfpd_e=&rfpds_s=&rfpd_e=&lupd_s=&lupd_e=&sort= (Accessed July 2022).

CHANGES IN THE QUALITY OF CARE FOR PEOPLE LIVINGWITH SMA

IMPROVING CARE AND MANAGEMENT OF SMA

CARE FOR WALKERS AND SITTERS

CONNECT

CHANGES IN THE QUALITY OF CARE FOR PEOPLE LIVING
WITH SMA