Penn State Award Targets Doctors of Ehlers-Danlos Patients Without Specialty in This Rare Disease

Marisa Wexler, MS avatar

by Marisa Wexler, MS |

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Ehlers Danlos grant award

The Penn State Clinical and Translational Science Institute is funding seven new projects through its Bridges to Translation pilot grant program. One project aims to improve understanding of Ehlers-Danlos syndromes among primary care doctors.

The goal of the Bridges to Translation program is to fund research in fields that, although with the potential to address health concerns, are not generally considered medical research. Special consideration is given to those looking to improve the lives of vulnerable people touched by healthcare disparities, like those with rare disease and people living in rural areas.

The program awards grants of up to $50,000. The underlying idea is that the grants can be used to gather preliminary data in support of more substantial future grant applications.

The Ehlers-Danlos project being funded is titled “Educating primary care doctors to help patients with a rare disease,” and is being led by Jane R. Schubart, MBA, MS, PhD, an associate professor of surgery, medicine and public health sciences, and Rebecca Bascom, MD, MPH, a professor of medicine, both with Penn State.

Their project aims to assess the efficacy of an educational strategy called ECHO, which stands for Extension for Community Healthcare Outcomes. This model aims to help primary care physicians to treat people with rare diseases — in this case, Ehlers-Danlos syndrome, which has 13 known types — by connecting them with a network of specialists.

ECHO utilizes a ‘hub and spokes’ model: primary care doctors in rural communities (the ‘spokes’), where there is limited or no access to specialists, are connected with specialist teams at academic centers (the ‘hub’). This allows for mentoring and regular virtual clinics and case presentations, all with the goal of improving non-specialists’ ability to provide expert care for those who need it.

“People with Ehlers-Danlos Syndromes are a vulnerable group who are falling through the cracks in our healthcare system,” Schubart said in a Penn State news release written by Matthew G. Solovey.

“Primary care physicians with expertise in treating Ehlers-Danlos Syndromes are difficult to find, and specialists have waiting lists of two-to-three years,” Schubart added.

The project will specifically evaluate how easy it is to implement the ECHO model, and how effective the model is at increasing access to specialized, quality care.

According to Penn State, researchers are invited to submit letters of intent through Dec.2 at 5 p.m. ET for the institute’s next Bridges to Translation grant round.