Originally published on September 25, 2013.
Dr. Matthew Halanski was awarded funding by Cure SMA for one of four Clinical Care focused projects. The project is being conducted at the University of Wisconsin. This award for $50,000 will fund a project to create a database of patients with SMA from multiple clinical centers. It will be used to compare outcomes across sites and to generally improve patient care.
Project Description:
Spinal Muscular Atrophy: A Multicenter Multidisciplinary Assessment
Objective: To create a database of patients with SMA from multiple clinical centers focused on 3 clinical care areas: breathing support, nutrition, and spine care. The database will be used to compare patient outcomes with the goal to improve the standard of care for individuals with SMA.
Research Strategy: To enroll >150 patients from the University of Wisconsin plus patients from 5 other care centers using an electronic database called REDCap and the common date elements identified by the NINDS. The data will be compared and analyzed across 3 clinical care areas to identify associations with care management and outcomes such as decreased hospitalizations and survival.
Significance of the Project: This project will facilitate the comparison of clinical management across clinical centers around the country to better establish evidence-based best practice clinical management strategies.
Meet Dr. Halanski:
Who are you?
I am a pediatric orthopedic surgeon at the University of Wisconsin. I have been in Madison for a little over two years Clinically, I care for children with SMA managing their orthopedic concerns including spinal deformities, hip dislocation, and pathologic fractures. I was recently placed on the “Growing Spine Committee,” in the Scoliosis Research Society.
How did you first become involved in SMA research?
As many know, UW-Madison is a center with significant experience caring for individuals with SMA. Upon my arrival two years ago, one of my roles was to take over the orthopaedic care of these children. With little prior clinical experience treating this population, I reviewed the literature to find the best way to manage their orthopaedic issues and was frustrated to find very little evidence as to the best way to manage their spines, hips, and bone health. At that point I decided a multi-center, multi-disciplinary database was necessary to objectively determine how to best manage this population.
What is your current role in SMA research?
The main emphasis of our work is to demonstrate that we can coordinate a retrospective multi-center, multi-disciplinary electronic database to begin to answer fundamental questions regarding the clinical care of these children. We plan to roll this retrospective database into a prospective database so that longitudinal evaluation of patients and treatments can be med to optimize the care of these children.
Cure SMA has been funding critical research to develop a treatment and cure for the disease since 1984, along with providing important resources and support for families affected by SMA. In 2013, we launched a new program to fund care research to drive improvements in patient care in spinal muscular atrophy. This program is focused on improving care and the quality of life for SMA patients.
The results of funded projects will build an evidence base and demonstrate measurable, positive effects on the clinical management and lives of patients with SMA. These results will then be used to provide:
• Educational programs for professional medical providers, such as the Cure SMA CME day
• New family-focused care publications, such as the Cure SMA Care Series Booklets
• Peer reviewed journal publications to influence insurance coverage.