As increased treatment options have helped more people with spinal muscular atrophy (SMA) live longer, healthier lives, more young adults are navigating the transition to adult care. This means moving from the pediatric care team that, in many cases, has known them since childhood to adult healthcare systems where they are meeting providers for the first time.
A study from Cure SMA, published in Neurology and Therapy, asked adults aged 18-29 living with SMA about their own experiences with this transition.
The findings: people who felt good about their transition were more likely to have had some provider-led preparation along the way that included elements such as readiness check-ins, planning conversations, and a written transition plan, rather than just a single handoff appointment. Almost everyone surveyed though, said it was hard to find adult doctors with SMA-specific expertise.
To learn more about the transition to adult care, please read the full study here: Assessment of Transition Plan Implementation and Provider Engagement Among Adults Living with Spinal Muscular Atrophy (SMA): Findings from a Cross-Sectional Survey
Cure SMA is thankful for all the members of the SMA community who have generously shared their experiences through this research. Funding for this initiative was provided by the 2021 and 2022 SMA-IC; members included Cure SMA, Biogen, Genentech/ Roche Pharmaceuticals, Novartis Gene Therapies, Scholar Rock Biohaven Pharmaceuticals, Epirium Bio, 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, Novartis, Scholar Rock, Biogen, Genentech/Roche Pharmaceuticals, argenx, NMD Pharma, and SMA Europe.