Every single individual with SMA and their families bring a unique perspective that, collectively, help us drive further progress and adapt to the changing landscape of SMA.

About the Survey

For the past five years, the Cure SMA Community Update Survey has collected data and information on the SMA community’s experiences and daily challenges. Every individual brings a unique perspective that, collectively, helps us drive further progress and adapt to the changing landscape of SMA.

Our top priority is to represent the patient voice from the whole community so we can drive research and care to meet patient needs. Completing this survey is one tangible, and relatively simple, way for you to make your voice heard. Every piece of data collected allows us to track changes in the attitudes, feelings, and actions of the SMA community over time. Data from the survey informs Cure SMA’s advocacy agenda and has been featured in state fact sheets, legislative support statements, and educational outreach to federal and state leaders to showcase the priorities and needs of the SMA community related to newborn screening, employment, transportation, community living, and healthcare.

Results from the Community Update Survey are also used to inform and develop of Cure SMA initiatives supporting clinical trials and care. Most recently, the results were included in the Critical Path Innovation Meeting package. This meeting—held virtually in the summer of 2020—enhanced the U.S. Food and Drug Administration’s understanding of the most significant unaddressed needs for treating children and adults with SMA. This included data on decreasing hospitalization rates across all SMA types (Figure 1), an increase in the proportion of individuals with SMA Type I reporting to sit without support, and treatment updates over the past several years.

Frequently Asked Questions

  • When is the annual community update survey open? The survey will open in early April and close 6 weeks later. I would like to complete a survey, am I eligible to participate?

  • Will I receive an email with a link to the survey? Cure SMA will email a survey link to all eligible individuals in the Cure SMA membership database. If you are eligible and have not received an email, please check your spam inbox or contact the Cure SMA survey team at [email protected].

  • Are there incentives for completing a survey? Everyone who completes a survey will be entered into a drawing to win a Hotel & Conference Registration package to the Annual Cure SMA Conference, a gift card, and many other prizes! Winners will be notified by June 30th, 2022.

  • Will my responses be kept confidential? All personal information and individual responses will be kept confidential.

  • What if I have more questions? Please feel reach out to the Cure SMA survey team at [email protected].


  • The Cure SMA Membership Surveys: Highlights of Key Demographic and Clinical Characteristics of Individuals with Spinal Muscular Atrophy. Belter L, Jarecki J, Reyna SP, et al. Journal Neuromuscular Dis. 2021;8(1):109-123. doi:10.3233/JND-200563

  • Quality of life data for individuals affected by spinal muscular atrophy: a baseline dataset from the Cure SMA Community Update Survey. Belter L, Cruz R, Jarecki J. Orphanet J Rare Dis. 2020 Aug 24;15(1):217. doi: 10.1186/s13023-020-01498-2.

Click here to complete the 2022 Community Update Survey

The Cure SMA Industry Collaboration

The Cure SMA Industry Collaboration (SMA-IC) was established in 2016 to leverage the experience, expertise, and resources of pharmaceutical and biotechnology companies, as well as other nonprofit organizations involved in the development of spinal muscular atrophy (SMA) therapeutics to more effectively address a range of scientific, clinical, and regulatory challenges. It is currently comprised of our partners at Biogen, Genentech/Roche Pharmaceuticals, Scholar Rock, Novartis Gene Therapies, Biohaven Pharmaceuticals, Epirium Bio, and SMA Europe.