Cure SMA is pleased to announce the publication of the first in a series of new resources to support the care of individuals living with Spinal Muscular Atrophy (SMA).
As part of our ongoing efforts to drive care improvements for the entire SMA community, Cure SMA recently published, Spinal Muscular Atrophy (SMA) Update in Best Practices: Recommendations for Diagnosis Considerations in Neurology Clinical Practice. The important recommendations were developed with the collaboration of SMA experts in the healthcare community, individuals living with SMA, and caregivers. The recommendations are aimed at standardizing and improving the quality of care provided to individuals and families affected by SMA and focused on management of SMA diagnosis through newborn screening and diagnosis of adults with SMA.
Cure SMA will promote this publication to healthcare professionals including our 300 treatment and care sites and state newborn screening public health laboratories through email outreach and postings, webinars, CME content development, and medical conference presentations.
A summary report of the published recommendations is also available. This resource aims to empower newly diagnosed individuals with SMA and their families and caregivers to actively participate in and advocate for their care and treatment.
Additional SMA Update in Best Practice resources will be created for both healthcare professionals and the community focused on treatment considerations, scoliosis, nutrition, and pulmonary care.
Thank you!
Thank you to the community members and clinicians who supported the development of this resource.
Funding for this initiative was provided by the Cure SMA Real World Evidence Collaboration; members include Cure SMA, Novartis, Biogen, Genentech/Roche.