Position Statement: Sharing of Clinical Research Data in Spinal Muscular Atrophy to Accelerate Research and Improve Outcomes for Patients

J Neuromuscul Dis. 2018;5(2):131-133. doi: 10.3233/JND-180325.
No abstract available

MeSH terms

  • Biomedical Research*
  • Community Participation
  • Family
  • Humans
  • Information Dissemination*
  • Outcome Assessment, Health Care
  • Rare Diseases / therapy*
  • Registries*
  • Spinal Muscular Atrophies of Childhood / therapy*