A LOT HAS CHANGED IN THE MANAGEMENT OF SPINAL MUSCULAR ATROPHY (SMA).
There are now new options for the care and management of your condition.
ASK YOUR DOCTOR FOR A SPECIALIST REFERRAL TODAY
Read below to find out more:
Are you receiving the most up-to-date standards of care?
A lot has changed in the quality of care offered to people living with SMA1,2
Ongoing research is providing an ever-increasing understanding of the science behind SMA and care options.1–3
There has been considerable research into SMA in recent years:4–7
on SMA between 2010 and 2018*5,6
studying SMA*7
This momentum has created far-reaching changes in the care and management of people living with SMA.1,2
SMA standards of care have been updated
YOU ARE PLACED at the very centre of care.
*Accurate as of 18 November 2019
Why is disease stabilisation important?
WITHOUT INTERVENTION, people living with type II/III SMA will see progression of their disease over time8,9
YOUR PERSPECTIVE MAKES A DIFFERENCE
Have you had a genetic test?
It’s important to get your condition diagnosed by a genetic test1
IF YOU HAVE ALREADY HAD A TEST, SPEAK TO YOUR DOCTOR TO ENSURE YOU ARE RECEIVING THE MOST APPROPRIATE CARE
IF YOU HAVE ALREADY HAD A TEST, SPEAK TO YOUR DOCTOR TO ENSURE YOU ARE RECEIVING THE MOST APPROPRIATE CARE
Delays in diagnosis are common, this can potentially impact your care options15
You may be eligible for care options that are suitable for those with a specific genetic diagnosis16
You may have a condition that is not SMA but has similar characteristics (e.g. multifocal motor neuropathy), and you may need to receive different care options17
Need to find an SMA specialist near you?
Now is the time to find out how the latest changes to SMA management could potentially benefit you
Ask your doctor for a referral to an SMA specialist
Ask your doctor for a referral to an SMA specialist
References
1. 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. 2. 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. 3. Bharucha-Goebel D, Kaufmann P. Treatment Advances in Spinal Muscular Atrophy. Curr Neurol Neurosci Rep. 2017;17(11):91. 4. Juntas Morales R et al. Adult-onset spinal muscular atrophy: An update. Rev Neurol (Paris). 2017;173(5):308-319. 5. National Center for Biotechnology Information. PubMed website. Available at: https://www.ncbi.nlm.nih.gov/pubmed/?term=(((spinal)+AND+muscular)+AND+atrophy)+AND+(%222018%2F01%2F01%22%5BDate+-+Publication%5D+%3A+%222018%2F12%2F31%22%5BDate+-+Publication%5D). Accessed 18 November 2019. 6. National Center for Biotechnology Information. PubMed website. Available at: https://www.ncbi.nlm.nih.gov/pubmed/?term=(((spinal)+AND+muscular)+AND+atrophy)+AND+(%222010%2F01%2F01%22%5BDate+-+Publication%5D+%3A+%222010%2F12%2F31%22%5BDate+-+Publication%5D). Accessed 18 November 2019. 7. ClinicalTrials.gov Search for ‘Recruiting, Active, not recruiting, Enrolling by invitation Studies | Spinal Muscular Atrophy’ Available at: https://clinicaltrials.gov/ct2/results?cond=Spinal+Muscular+Atrophy&Search=Apply&recrs=a&recrs=f&recrs=d&age_v=&gndr=&type=&rslt=. Accessed 18 November 2019. 8. Kaufmann P et al. Prospective cohort study of spinal muscular atrophy types 2 and 3. Neurology. 2012;79:1889-1897. 9. Rouault F et al. Disease impact on general well-being and therapeutic expectations of European Type II and Type III spinal muscular atrophy patients. Neuromuscul Disord. 2017;27(5):428-438. 10. Wan H et al. “Getting ready for the adult world”: how adults with spinal muscular atrophy perceive and experience healthcare, transition and well-being. Orphanet J Rare Dis. 2019;14(1):74. 11. Walter M et al. Safety and Treatment Effects of Nusinersen in Longstanding Adult 5q-SMA Type 3 – A Prospective Observational Study. J Neuromuscul Dis. 2019;[Epub ahead of print]:1-13. 12. Day JW et al. Nusinersen Experience in Teenagers and Young Adults With Spinal Muscular Atrophy (SMA). Abstract #24. Presented at the Muscular Dystrophy Association Clinical Conference 2018. March 11-14, 2018. Arlington, VA, USA. 13. Wang CH et al. Consensus statement for standard of care in spinal muscular atrophy. J Child Neurol. 2007;22(8):1027-1049. 14. Prior TW, Finanger E, Leach ME. Spinal muscular atrophy. NCBI Bookshelf Website. Available at: https://www.ncbi.nlm.nih.gov/books/NBK1352/. Updated November 14. 2019. Accessed November 2019. 15. Lin CW, Kalb SJ, Yeh WS. Delay in Diagnosis of Spinal Muscular Atrophy: A Systematic Literature Review. Pediatr Neurol. 2015;53:293-300. 16. NICE Technology appraisal guide [TA588]. 2019. Available at: https://www.nice.org.uk/guidance/ta588/chapter/2-Information-about-nusinersen. Accessed November 2019. 17. Visser J et al. Mimic syndromes in sporadic cases of progressive spinal muscular atrophy. Neurology. 2002;58(11):1593-1596.
ABOUT ‘TOGETHER IN SMA’
At Biogen, we are committed to supporting those with spinal muscular atrophy and their care team. Our hope for Together in SMA is that by providing information, we can help you get the most up-to-date care, and to help guide conversations with your doctor. Consulting with your doctor will help to develop a care plan that works best for you and your family.
We value the feedback and involvement of the SMA community as our understanding of the disease advances. We’ll be updating this site regularly with new insights and content from healthcare professionals, caregivers and people like you — because we are always Together in SMA