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Research Study Alert: Survey Examining Transfers of Care in the SMA Community

By Sujatha Gurunathan Wednesday, December 14, 2022

Researchers at Brandeis University are seeking adults living with spinal muscular atrophy (SMA) to participate in a survey about their experiences with transition planning and transfers of care between pediatric and adult care settings.

This study does not involve a new intervention. Enrolled participants will be asked to complete an anonymous online Qualtrics survey that is expected to take about 15 minutes. This survey will include questions about patient autonomy in different care settings, access to non-SMA­related care, and barriers to transfers of care.

To be eligible, individuals must meet the following inclusion criteria:

  • Have a genetic diagnosis of SMA
  • 18 years of age or older
  • Able to understand English without the use of a translator
  • Live in the US

Individuals may not be eligible to participate if they meet the following exclusion criteria:

  • Diagnosed with another disorder or no diagnosis
  • A minor
  • Require an interpreter for the survey
  • Live outside the US

To participate in this study, please follow this link and fill out the survey:

Participation in this survey will enter you in a raffle for the chance to win one of four $50 Amazon gift cards. This research is being conducted by Jesika Smith, a second-year genetic counseling student from Brandeis University, overseen by Cassie Buck, MS, CGC.

Any further questions or inquiries can be directed to Study Coordinator Jesika Smith by email:




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