Research Study Alert: Survey for Caregivers of Individuals with SMA about Communication Abilities

Researchers at Russell Sage College are seeking parents or legal guardians of individuals with spinal muscular atrophy (SMA) to participate in a survey about the communication abilities of the affected individuals. Analysis of the current communicative behaviors used by individuals with SMA will help researchers develop communication systems that better address the needs of this population.

Approximately 50 parents or legal guardians of individuals diagnosed with SMA will be surveyed. The participants will be required to provide consent to take part in the research study and then complete a one-hour phone/zoom session with the investigator. During the session, the investigator will ask questions from two documents: (i) case history and (ii) Inventory of Potential Communicative Acts (IPCA). All sessions will be recorded. 

To be eligible, individuals must meet the following criteria:

  • Parents or legal guardians (18 years and above) of individuals diagnosed with SMA
  • Child with SMA diagnosis must be at least 18 months 

Individuals may not be eligible to participate in the following cases:

  • Parent/guardian without a child diagnosed with SMA

Interested participants can reach out to the study coordinator Dr. Cheryl Ostryn at email: