The needs of people with SMA has evolved. Along with it much has changed in the quality of care and care approaches offered to them. Research into the underlying mechanisms of SMA has transformed the understanding of the disease and led to updated standards of care in terms of support and care options.1-3
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.
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RESEARCH INTO SMA
The clinical spectrum of SMA is highly variable and requires comprehensive medical care involving multiple disciplines.1 Specialist neurologists now have access to care options with the potential to stabilise your patient’s disease and help preserve the functions so important to them.1,2,4
Considerable research has been conducted into SMA in recent years, and as of November 2019:5-8
77%
INCREASE
in scientific papers on SMA between 2001-2011 and 2011-2020*6,7
57
CLINICAL TRIALS
currently studying SMA*8
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THE IMPORTANCE OF STABILISING SMA IN PATIENTS
It is important that you talk with your patient about the benefits of a specialist neurologist referral.
Without intervention, SMA patients will continuously lose motor function.9 Acting sooner can make a difference to the life of your SMA patient.
What stabilising disease progression means for the patient
81% of survey respondents (N=288) felt that a treatment that could stabilise their disease, would represent major therapeutic progress10
Many care options are now available with the potential to stabilise SMA1,2,4
The standards of care for SMA have been updated, with new care options becoming available1,2
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STARTING WITH GENETIC TESTING
It is important that your patients are genetically tested.
Once referred, a specialist neurologist will provide your patient with a genetic test (if they haven’t had one already).
Genetic testing will identify whether your patient is eligible for care options that are suitable for those with a specific genetic diagnosis.9
If your patient has a condition that is not SMA, referral will allow other care options to be discussed.11
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UPDATED STANDARDS OF CARE
In 2007, an International Conference on the Standards of Care for SMA published a consensus statement on SMA standards of care that has been widely used throughout the world.12
In 2018, a two-part update of these earlier recommendations was published, which includes changes to the management and care of patients with SMA, along with information around new care options.1,2
Access the new standards of care here:
Updates on diagnosis, rehabilitation, orthopaedic and spinal management; and nutritional, swallowing and gastrointestinal management:1
Ensure your patient receives the most up-to-date care to stabilise their disease and retain their independence – refer them to a specialist neurologist today.
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
1. Mercuri E, et al. Diagnosis and management of spinal muscular atrophy: Part 1: Recommendations for diagnosis, rehabilitation, orthopedic and nutritional care. Neuromuscl Disord 2018;28(2):103-115.
2. Finkel RS, Mercuri E, Meyer OH, 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. Darras BT, Chiriboga CA, Iannaccone ST, et al. Nusinersen in later-onset spinal muscular atrophy. Neurology 2019;92(21):e2492-e2506.
5. Juntas Morales R, Pageot N, Taieb G, et al. Adult-onset spinal muscular atrophy: An update. Rev Neurol (Paris) 2017;173(5):308-319.
9. Kaufmann P, McDermott MP, Darras BT, et al. Prospective cohort study of spinal muscular atrophy types 2 and 3. Neurology 2012;79(18):1889-1897.
10. Rouault F, Christie-Brown V, Broekgaarden R, 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.
11. Visser J, van den Berg-Vos RM, Franssen H, et al. Mimic syndromes in sporadic cases of progressive spinal muscular atrophy. Neurology 2002;58(11):1593-1596.
12. Wang CH, Finkel RS, Bertini ES, et al. Consensus Statement for Standard of Care in Spinal Muscular Atrophy. J Child Neurol 2007;22(8):1027-1049.
