Featured

• American College of Obstetricians and Gynecologists. (2021). Carrier Screening for Spinal Muscular Atrophy (SMA).
• American Journal of Managed Care. (2020). Newsletter: FDA Approves At-Home Oral Treatment for Spinal Muscular Atrophy. 
• Cleveland Clinic. (2015). Spinal Muscular Atrophy (SMA). 
• Cure SMA. (2019). About SMA. 
• Cure SMA. (2019). Newborn Screening for SMA. 
• Cure SMA. (2019). Receiving a Diagnosis Through Newborn Screening. 
• Cure SMA. (2019). The Discovery of SMA. 
• Cure SMA. (2019). Treatment. 
• Finkel, R. S., Mercuri, E., Meyer, O. H.; Simonds, A. K., Schroth, M. K, Graham, R. J., . . . Sejersen, T. (2018). Diagnosis and management of spinal muscular atrophy: Part 2: Pulmonary and acute care; medications, supplements and immunizations; other organ systems; and ethics. Neuromuscular Disorders, 28(3), 97-207. 
• Halanski, M. A., Patterson, K. G., Sund, S. A., Makholm, L. M., & Schroth, M. K. (2014). Assessing the Needs of the SMA Population: Survey Results of Health Care Providers and Families. SAGE Open, October-December 2014: 1-5.  
• Johns Hopkins Medicine. (2020). Spinal Muscular Atrophy (SMA). 
• Kolb, S. J., & Kissel, J. T. (2011). Spinal muscular atrophy: a timely review. Archives of Neurology, 68(8), 979–984.  
• Lager, C., & Kroksmark, A-K. (2015). Pain in adolescents with spinal muscular atrophy and Duchenne and Becker muscular dystrophy. European Journal of Paediatric Neurology, 19(5): 537-546. [Abstract]. 
• Mercuri, E., Finkel, R. S., Muntoni, F., Wirth, B., Montes, J., Main, M., . . . Szlagatys-Sidorkiewicz, A. (2018). Diagnosis and management of spinal muscular atrophy: Part 1: Recommendations for diagnosis, rehabilitation, orthopedic and nutritional care. Neuromuscular Disorders, 28(2): 103-115.
• Murrell, D. V., Lotze, T. E., Farber, H. J., Crawford, C. A. & Wiemann, C. M. (2017). The Experience of Families With Children With Spinal Muscular Atrophy Type I Across Health Care Systems. Journal of Child Neurology, 32(11): 917-923.
• National Organization for Rare Disorders. (2020). Rare Disease Database: Spinal Muscular Atrophy.
• Qian, Y., McGraw, S., Henne, J., Jarecki, J., Hobby, K., & Yeh, W. S. (2015). Understanding the experiences and needs of individuals with Spinal Muscular Atrophy and their parents: a qualitative study. BMC neurology, 15, 217.
• Roche. (2020). FDA approves Roche’s Evrysdi (risdiplam) for treatment of spinal muscular atrophy (SMA) in adults and children 2 months and older.
• Schorling, D. C., Pechmann, A., & Kirschner, J. (2020). Advances in Treatment of Spinal Muscular Atrophy - New Phenotypes, New Challenges, New Implications for Care.  Journal of Neuromuscular Diseases, 7(1), 1–13.
• U.S. Department of Health and Human Services. National Institute of Neurological Disorders and Stroke. (2019). Spinal Muscular Atrophy Fact Sheet.
• U.S. Department of Health and Human Services, Health and Resources and Services Administration, Federal Advisory Committees. (2018). Recommended Uniform Screening Panel.
• U.S. Department of Health and Human Services, Health and Resources and Services Administration, Maternal and Child Health Bureau. (2018). Newborn Screening for Spinal Muscular Atrophy: A Summary of the Evidence and Advisory Committee Decision.
• U.S. Food and Drug Administration. (2016). News release: FDA approves first drug for spinal muscular atrophy. 
• Wilkins, R. H., & Brody, I. A. (1971). Infantile Spinal Muscular Atrophy. Archives of Neurology, 25(3), 276.

Families

• Cure SMA, a national nonprofit advocating for patients who have SMA and their families. Find local and national resources. 
• Early Childhood Special Education. Information from Texas Project First, a family-to-family network.
• Muscular Dystrophy Association offers fact sheets and other information. 
• U.S. Department of Human Services, National Institutes of Health, National Library of Medicine. Clinicaltrials.gov 
• U.S. Department of Human Services, National Institutes of Health, National Library of Medicine. Genetic Conditions. 

Medical Definitions

The medical definitions in this tutorial were obtained or adapted from the American Academy of Pediatrics, the Mayo Clinic, the National Cancer Institute, National Organization for Rare Disorders and the journals BMC Musculoskeletal Disorders, Neuromuscular Disorders and Spine.

Continuing Medical Education

The Texas Department of State Health Services, Continuing Education Service is accredited by the Texas Medical Association to provide continuing medical education for physicians. 

The Texas Department of State Health Services, Continuing Education Service designates this enduring material for a maximum of 0.75 AMA PRA Category 1 Credit(s)™. Physicians should claim only the credit commensurate with the extent of their participation in the activity.

Continuing Nursing Education

The Texas Department of State Health Services, Continuing Education Service is accredited as a provider of continuing nursing education by the American Nurses Credentialing Center’s Commission on Accreditation. The Texas Department of State Health Services, Continuing Education Service has awarded 0.75 contact hour(s) of Continuing Nursing Education.

Social Workers

The Texas Department of State Health Services, Continuing Education Service, the continuing education provider, ensures that the education provided is directly related to the practice of social work; and that the individuals presenting the information have the necessary experience and knowledge in the topics presented. The Texas Department of State Health Services, Continuing Education Service has awarded 0.75 hours of credit.

Certificate of Attendance

The Texas Department of State Health Services, Continuing Education Service has designated 0.75 hour(s) for attendance.

General Disclosure

One of the requirements of continuing education is disclosure of the following information to the learner:

1. Notice of requirements for successful completion of continuing education activity. To receive continuing education credit the learner must successfully complete the following activities:
   • Create a Texas Health Steps account.
   • Complete on-line registration process.
   • Thoroughly read the content of the module.
   • Complete the on-line examination.
   • Complete the evaluation.
2. Commercial Support.
   The THSTEPS Web-based Continuing Education Series has received no commercial support.
3. Disclosure of Relevant Financial Relationships.
   The THSTEPS Continuing Education Planning Committee and the authors of these modules have no relevant financial relationships to disclose.
4. Non-Endorsement Statement.
   Accredited status does not imply endorsement of any commercial products or services by the Department of State Health Services, Continuing Education Service; Texas Medical Association; or American Nurse Credentialing Center.
5. Off-Label Use.
   Using a disclosure review process, the THSTEPS Continuing Education Planning Committee has examined documents and has concluded that the authors of these modules have not included content that discusses off-label use (use of products for a purpose other than that for which they were approved by the Food and Drug Administration).

The following are policies and definitions of terms related to continuing education disclosure:

The intent of disclosure is to allow Department of State Health Services (DSHS) Continuing Education Service the opportunity to resolve any potential conflicts of interest to assure balance, independence, objectivity and scientific rigor in all of its Continuing Education activities.

All faculty, planners, speakers and authors of Department of State Health Services (DSHS) Continuing Education Service sponsored activities are expected to disclose to the Department of State Health Services (DSHS) Continuing Education Service any relevant financial, relationships with any commercial or personal interest that produces health care goods or services concerned with the content of an educational presentation. Faculty, planners, speakers and authors must also disclose where there are any other potentially biasing relationships of a professional or personal nature.

Glossary of Terms

Conflict of Interest: Circumstances create a conflict of interest when an individual has an opportunity to affect Continuing Education content about products or services of a commercial interest with which she/he has a financial relationship or where there are any other potentially biasing relationships of a professional or personal nature.

Commercial Interest: Any entity producing, marketing, re-selling, or distributing health care goods or services consumed by, or used on, patients.

Financial Relationships: Those relationships in which the individual benefits by receiving a salary, royalty, intellectual property rights, consulting fee, honoraria, ownership interest (e.g., stocks, stock options or other ownership interest, excluding diversified mutual funds), or other financial benefit. Financial benefits are usually associated with roles such as employment, management position, independent contractor (including contracted research), consulting, teaching, membership on advisory committees or review panels, board membership, and other activities for which remuneration is received or expected. Relevant financial relationships would include those within the past 12 months of the person involved in the activity and a spouse or partner. Relevant financial relationships of your spouse or partner are those of which you are aware at the time of this disclosure.

Off Label: Using products for a purpose other that that for which it was approved by the Food and Drug Administration (FDA).

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