Indiana University Health Center for Ehlers-Danlos Syndromes

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A Center for Change

In October 2019, thanks to the generosity of our donors, The Ehlers-Danlos Society pledged $500,000 over five years to support the opening of the Indiana University Health Center for Ehlers-Danlos Syndromes: a clinic committed to advancing research, education, and patient care for those living with the Ehlers-Danlos syndromes (EDS), hypermobility spectrum disorders (HSD), and associated symptoms and conditions. IU Health Foundation committed to a partially matched donation following the pledge.

We know that around the world, what is desperately needed is early diagnosis, validation, and effective multidisciplinary care. We look forward to making this a reality at this center, researching effectively so that this can be rolled out around the world – so that no matter where you live, you have access to a multidisciplinary team approach.

“Helping people with all forms of Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders to more effectively manage their disorders and live with less pain and greater functionality.”

The Center for Ehlers-Danlos Syndromes, led by Dr. Clair Francomano, will provide comprehensive, multidisciplinary care to people with EDS, HSD, and related conditions, and work on three key areas: clinical care, research, and education.

The center is open for in-person appointments with Dr. Francomano, currently limited due to the COVID-19 pandemic or being adapted to virtual appointments.

Dr. Francomano and the IU Health team are working to establish a multi-disciplinary clinic, working with health care specialists in pain, dysautonomia, physical medicine, and rehabilitation, and working to establish partners in gastroenterology, urogynecology, neurology, and neurosurgery departments.

The team is currently working on a retrospective study to examine patient-reported outcomes for craniocervical fusions among patients of the Metropolitan Neurosurgery Group. The objective is to examine patient-reported outcomes in patients with Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorder with craniocervical instability.

A Neurosurgical Outcomes Team has been developed, including Dr. Fraser Henderson, Dr. Malini Narayanon, and Dr. Peter Rowe, with Dr. Jane Schubart, a surgical outcomes researcher from Penn State University College of Medicine, now joining the team. The Neurosurgical Outcomes Team has begun a collaboration with the Bobby Jones Chiari and Syringomyelia Foundation to initiate planning for a multi-center study on craniocervical and C1-2 fusions in persons with the Ehlers-Danlos syndromes.

Dr. Francomano is also collaborating with Dr. Rebecca Bascom and Dr. Jane Schubart from Penn State University College of Medicine. An ongoing study includes an in-depth analysis of clinical care utilization by persons with the Ehlers-Danlos Syndromes from Market Scan, a large database of medical claims from private insurers around the United States. Their project on the use of drugs for gastrointestinal co-morbidities was presented at the recent EDS ECHO Summit by Dr. Radha Dhingra.

EDS ECHO is a program for healthcare professionals across all disciplines who want to improve their ability to care for people with EDS, HSD, and associated symptoms and conditions. In April 2019, The Ehlers-Danlos Society began with two hubs, one at IU Health, USA, and the other at The Royal Society of Medicine, London, UK. Over time, our aim is to open hubs all over the world.

Alongside the EDS ECHO Clinicians program, EDS ECHO now has a new drop-in session once a month for clinicians. This invitation is extended to all clinicians who have participated in any EDS ECHO program. Each session is co-facilitated by Dr. Alan Hakim and Dr. Clair Francomano. The aim of the sessions is to allow colleagues to bring current clinical concerns about their patients to the group for advice.

Dr. Francomano also takes part in the Penn State STRETCH ECHO/COVID Enhancement: Clinical Discussions of the impact of the COVID-19 pandemic on persons with EDS and HSD, twice monthly.

We are delighted that a symposium proposal to the American College of Medical Genetics has been accepted for presentation in April 2021, The Ehlers-Danlos Syndromes Circa 2021, to be presented by Dr. Clair Francomano, Dr. Ellen Elias, Dr. Joel Hirshhorn, and Dr. Alan Hakim.

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