ResearchMatch launches sub-registry for Ehlers-Danlos syndrome

Disease Neutral Research Volunteer Registry Launches sub-registry for Ehlers-Danlos Syndrome

Nashville, TN - September 10, 2013 - ResearchMatch (RM), the country's first nationwide, non-profit, volunteer, research recruitment platform for all health conditions is launching a sub-registry for Ehlers-Danlos syndrome (EDS) in collaboration with the Ehlers-Danlos National Foundation dedicated to leading the search for knowledge about EDS and building a community of people who work together to effect change.

RM has a simple goal — to bring together two groups of people who are searching for each other: people who are trying to find research studies, and researchers who are looking for people to participate in their studies. It is a free, secure online registry that has been developed by major academic institutions across the country to engage others in the mission of today's ethical, expedited research and will hopefully provide a voice for people with EDS in the future. It is through research that scientists can improve the quality of life for people with Ehlers-Danlos syndrome.

Ehlers-Danlos syndrome (EDS) is a group of genetic, connective tissue diseases. There are six major types of EDS most commonly affecting joints, skin and blood vessel walls and the symptoms vary from mild to life-threatening. Although great strides have been made in research, we need to continue the search for knowledge related to early detection, diagnosis and treatment for EDS patients.

"EDNF is thrilled that ResearchMatch is creating a sub-registry for Ehlers-Danlos syndrome. This will help facilitate much needed research that will positively affect people living with EDS, as well as their friends and families, and that's a big part of EDNF's mission. Thank you, ResearchMatch." — Sandy Chack, Board of Directors Chair, Ehlers-Danlos National Foundation

All volunteers who register with RM indicating Ehlers-Danlos syndrome as one of their conditions will be prompted to answer optional questions about their condition to enhance the precision and prescreening process for matching volunteers with research teams studying EDS. Presently, Researchmatch.org is the only non-profit clinical trials registry that proactively connects potential volunteers and researchers.

To register as a volunteer or a researcher, please visit researchmatch.org.

About ResearchMatch

ResearchMatch is a national partnership created as a centralized, web-based recruitment registry, connecting individuals who are interested in participating in research with researchers nationwide. The site is a funded in part by the National Institutes of Health (NIH) and Clinical and Translational Science Award (CTSA) program grants. The CTSA program is led by the NIH's National Center for Advancing Translational Science (NCATS). The content of this website is solely the responsibility of ResearchMatch and Vanderbilt University and does not necessarily represent the official views of the NIH.

Contact: Kathy Edson, ResearchMatch kathleen.edson@vanderbilt.edu (615) 343-2571

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