SMA Care Center Network and Clinical Data Registry Launched

By Cure SMA | Published On October 10, 2018

SMA Care Center Network and Clinical Data Registry Launched

Cure SMA today announced the launch of our SMA Care Center Network. The SMA Care Center Network is the centerpiece of our efforts to address the changing landscape of SMA. The goal of the SMA Care Center Network is to develop an evidence-based standard of care that will improve the lives of all those affected by SMA.

Individuals affected by SMA have complex medical needs. This requires a team approach, with neurologists, pulmonologists, physical and occupational therapists, nutritionists, orthopedists, and others working together to treat the individual. Just as the clinical team takes a multi-faceted approach to treating the individual, Cure SMA takes a multi-faceted approach to improving care for all those affected by SMA.

With the advent of approved therapies for SMA, care is more important than ever before. As treatments extend lifespan, the number of individuals living with SMA will increase. This means we need more doctors and healthcare providers trained in SMA care, particularly for the teen and adult SMA communities. And with new treatments, the experience of SMA is rapidly shifting, and healthcare providers need to adapt quickly to these changing needs.

The network will also help expand access to approved SMA treatments, increase the number of sites for SMA clinical trials, and help accelerate and enhance insurance coverage and reimbursement.

More About the SMA Care Center Network

In this initial launch phase, we will begin with 16 geographically diverse centers, to ensure we collect information to understand the needs of our entire community. In subsequent years, additional care centers will be added to the network as our community’s needs continue to grow.

The first four of these 16 centers are Arkansas Children’s Hospital, Little Rock, AR; Gillette Children’s Specialty Healthcare, St. Paul, MN; University of Rochester Medical Center, Rochester, NY; and the University of Utah Primary Children’s Hospital, Salt Lake City, UT. The remaining 12 centers will be announced through the end of the year.

Member sites will collaboratively collect patient care data through the clinical data registry. This data will help answer questions about the impact of SMA, and develop strategies for optimal care for those affected by SMA.

From this analyzed broad body of data, we will determine a standard of care and best practices, and then share that with local doctors and healthcare providers across the country. This will allow all with SMA to benefit from the most cutting-edge information on care.

The SMA Care Center Network will also increase the number of sites that offer access to approved SMA treatments, by providing doctors with readily available data to guide proper administration of current and future approved treatments.

Over the course of the next three years, Cure SMA will invest $9.1 million in the development of the SMA Care Center Network. And the SMA Care Center Network is just one piece of our growing efforts in care, which include the SMA Clinical Care Meeting, held each year as part of the Annual SMA Conference, Cure SMA care series booklets, and our physical and occupational therapy mentoring programs, funded by Cure SMA.

Topics: Community & Awareness, Support & Care, Front Page News

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