Cure SMA Announces Expanded Phase 9 of SMA Industry Collaboration 

Cure SMA is pleased to announce the launch of an expanded Phase 9 of our SMA Industry Collaboration. The SMA Industry Collaboration is a multi-faceted partnership that brings together pharmaceutical companies, SMA Europe, Cure SMA, and other nonprofit organizations to share information, ideas, and data to benefit the broader SMA community.

Through the Industry Collaboration, we fund projects to ensure that effective, safe treatments can progress through clinical trials quickly and gain approval from the U.S. Food and Drug Administration (FDA) and international regulators. Our work also ensures that these treatments address the unmet needs of the SMA community, and that the community’s priorities and goals are incorporated into the development, review, and approval of therapies.

Click here to see what the SMA Industry Collaboration achieved during Phase 8 (2023)!


As the SMA Industry Collaboration embarks on its ninth year, Cure SMA and our partners at Scholar Rock, Biogen, Biohaven Pharmaceuticals, Genentech/Roche, Novartis, Alcyone Therapeutics, NMD Pharma, and SMA Europe will build upon previous achievements to further refine treatment outcome measures, improve clinical trial site capacity, and enhance knowledge of the SMA disease experience and the needs of affected individuals. Additionally, we will continue efforts to identify and address barriers that limit the SMA community’s access to clinical research, treatment, and care.

The SMA Industry Collaboration is sub-divided into “Topic Groups” that each have a particular focus and specific goals. Every year, each Topic Group outlines the projects it will complete to achieve those goals. Below is a description of the Phase 9 goals and priorities of each SMA Industry Collaboration Topic Group.

SMA Industry Collaboration Phase 8 (2023) Achievements

During Phase 7, the SMA Industry Collaboration spearheaded research efforts that increased SMA treatment awareness and addressed the unmet needs of the SMA community. A summary of these accomplishments may be found in the 2023 End of Year Report.

The SMA Industry Collaboration’s Phase 8 Accomplishments include:

  • Publication of five research articles in peer-reviewed journals
  • Publication of a summary document to present findings of the Comparative Analysis of 2017 and 2022 Cure SMA Risk/Benefit Survey to the SMA community
  • Completing a landscape review to assess how changes in screening, staffing shortages, and facility constraints have affected clinical trial site capacity and recruitment within the United States and Europe
  • Conducting a survey for adults living with SMA and caregivers to better understand the barriers that impact the communities access to SMA clinical research
  • Creating of a campaign to improve clinical trial awareness, knowledge, and access among the SMA community
  • Developing outcome measures designed for teens and adults (SMA-PRO, ATEND, SMACR-HI)
  • Developing assessments for voice, speech, and swallow
  • Distribution of the 7th Annual Cure SMA Community Update Survey to track changes regarding the unmet needs of the SMA community over time


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