Community Update Survey

Every individual with spinal muscular atrophy (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

Since 2017, the Cure SMA Community Update Survey has collected data and information on the SMA community’s experiences and daily challenges. Our top priority is to represent the voice of the whole community so we can drive research and care to meet the needs of everyone impacted by SMA. Completing this survey is one tangible, and extremely valuable, way for you to make your voice heard.

Every piece of data collected allows us to track changes in the attitudes, feelings, unmet needs, and actions of the SMA community over time. We are grateful for the 2000+ community members who have completed at least one annual Community Update Survey!

Please see below for how your data has impacted the Cure SMA Community!

Clinical Trials and Care

Results from the Community Update Survey are used to inform and develop Cure SMA initiatives supporting clinical trials and care. Results from the Community Update Survey were included in the Critical Path Innovation Meeting. 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. Data from the Community Update Survey was also used in the Patient-Led Listening Sessions with the FDA. You can find out more about those sessions here.



Data from the survey has informed Cure SMA’s advocacy agenda and has been featured in legislative 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, healthcare, and unmet needs.


Education and Awareness

Data from the Community Update Survey has shown exciting trends over time, such as a decrease in BiPAP utilization across our community (see Figure 1). Additionally, data on unmet needs (see Figure 2) among our community has been shared with our families, chapter leaders, healthcare providers, and industry partners to promote awareness for the development of new programs to support the Cure SMA Community.

Figure 1 - BIPAP Utilization Among the Overall SMA Population and by Age Groups
Unmet needs among Cure SMA Community Members, data from the 2023 Community Update Survey
Funding for this research was provided by the Cure SMA Industry Collaboration.
About 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.

Frequently Asked Questions

The survey will be open April 2-May 2, 2024

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].

Everyone who completes a survey will be emailed a $25 e-gift card.

All personal information and individual responses will be kept confidential.

Please feel reach out to the Cure SMA survey team at [email protected].


Belter L, Jarecki J, Reyna SP, et al. Journal Neuromuscular Dis. 2021;8(1):109-123. doi:10.3233/JND-200563

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Belter L, Cruz R, Jarecki J. Orphanet J Rare Dis. 2020 Aug 24;15(1):217. doi: 10.1186/s13023-020-01498-2

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Peterson IS, Belter LT, Curry MA, Jarecki J. Telemed J E Health. 2024 Feb;30(2):536-544. doi: 10.1089/tmj.2023.0293

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