Cure SMA Launches New Resources to Enhance Clinical Trial Access

Cure SMA is pleased to announce the release of new resources to support our community’s ability to navigate the evolving landscape of SMA clinical trials. These resources are intended to build knowledge in clinical trial procedures and preparation, to enhance awareness regarding actively recruiting clinical trials and sites, and to empower our community in their decision-making.  

  • SMA Registry and Clinical Trial Finder: Explore SMA clinical trials with our easy-to-use search widget. Filter by SMA type, location, trial phase, treatment status, and more to find trials that fit individual needs and preferences. 
  • Screening Visit Checklist: Prepare for the screening visit with a thorough checklist that organizes medical history and suggests questions to ask the research team. 
  • Decoding Informed Consent: Understanding informed consent is crucial! Our handout will guide adults living with SMA and caregivers through the key sections of the informed consent form, ensuring they’re confident in their decision to participate in a clinical trial. 
  • Travel Planners (Air and Ground): Manage travel details with ease! Our itineraries will help travel planning and are tailored to the unique needs of the SMA community. 

Thank you to the SMA community for sharing your experiences with clinical trials through surveys and discussion sessions. These resources were shaped by your invaluable feedback. To learn more about the SMA clinical trials process and how you can get involved, visit 

Funding for this initiative was provided by the 2023 SMA Industry Collaboration; members included Cure SMA, Biogen, Scholar Rock, Novartis Gene Therapies, Biohaven Pharmaceuticals, Epirium Bio, Genentech/Roche, and SMA Europe.  


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. Current members include Cure SMA, Scholar Rock, Biogen, Biohaven Pharmaceuticals, Genentech/Roche, Novartis, Alcyone Therapeutics, NMD Pharma, and SMA Europe.  

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