Matthew A. Halanski, a Cure SMA-funded researcher from University of Wisconsin – Madison, was the lead author on, “Assessing the Needs of the SMA Population,” an article recently published in the journal Sage Open.
Drawing on responses from both families and healthcare providers, the article investigated what medical issues are most important to families affected by spinal muscular atrophy, and what medical issues healthcare providers consider most crucial.
Families identified breathing issues, impact of diet, impact of disease on the family, spinal deformity, and surgical interventions as their most important issues. Healthcare providers also identified breathing, diet, family impact, and spinal deformity as urgent needs.
This survey was conducted by Dr. Halanski and his team with support from Cure SMA. Through our Annual Conference and other forms of outreach, families affected by SMA and healthcare providers in a variety of disciplines were invited to participate.
Dr. Halanski was also the recipient of a 2013 Cure SMA clinical care grant. His project, “Spinal Muscular Atrophy: A Multicenter Multidisciplinary Assessment” will create a database of patients with SMA from multiple clinical centers. The database will be used to compare patient outcomes with the goal of improving the standard of care for individuals with SMA.
The data from this study will be used to help build the database, ensuring that the most pressing issues for families and healthcare providers are addressed in it.
“We’re very grateful for the support we’ve received from Cure SMA. Without their funding, and without the thoughtful participation of so many families, this project would not be possible,” said Dr. Halanski. “We look forward to seeing the project completed, so that we can continue to raise the level of care that individuals SMA receive.”
Our thanks to Dr. Halanski and the rest of the authors—Drs. Karen G. Patterson, Sarah A. Sund, Linda M. Makholm, and Mary K. Schroth—for their hard work on this project, and to the families and healthcare providers who contributed to this survey.