Jordan T Jones, DO, MS

Physician Rheumatology; Director, Ehlers Danlos Syndrome Research Program; Associate Professor of Pediatrics, University of Missouri-Kansas City School of Medicine; Clinical Assistant Professor of Pediatrics, University of Kansas School of Medicine

Full Biography

Jordan Jones, DO, MS, Rheumatology, was awarded a one-year, $5,000 microgrant from The Ehlers-Danlos Society.

Dr. Jones’ project, “Patient Understanding of Disease and Clinical Needs After Diagnosis of Ehlers Danlos Syndrome,” aims to gain more knowledge about patients’ and families’ understanding of Ehlers Danlos Syndrome (EDS) and their disease specific needs and concerns immediately after they are diagnosed to be able to provide them with educational information that better addresses their needs.

EDS represents a family of genetic connective tissue disorders with overlapping symptoms that can be difficult to manage and treat. As Dr. Jones explains, much of the education provided to patients and families is based upon clinical experience from skilled providers and specialists, but it is based only on clinical experience.

The long-term goal of this research is to improve care for patients with EDS by gaining an understanding of what families and patients understand about EDS, their barriers to managing EDS, pursuing treatment, and their immediate clinical concerns and needs after they are diagnosed with EDS. Such knowledge will aid in the development and implementation of more targeted educational strategies to improve understanding and comfort with EDS diagnosis and appropriate management plans.

“We expect to improve our knowledge and understanding about patients’ and their family’s knowledge, and questions about EDS, which will help us empower and better guide patients and their family on their medical journey,” said Dr. Jones. “Our research findings will be innovative as they will raise awareness to the need for patient-centered educational interventions that address the concerns and questions that patients and their families have and want answered.”

The goal is to develop an educational tool that could be distributed to all newly diagnosed patients and families with EDS to improve understanding of the disease and help guide initial approach to treatment. If successful in our region, it could be disseminated nationally to improve patient access to patient relevant EDS education. 

Bill Black, PhD, and Lora Black, PhD, MPH, serve as co-investigators on the project.