The International Consortium on Ehlers-Danlos Syndromes and Related Disorders was created following the 2017 diagnostic criteria and management and care guidelines. The Consortium is an independent group of medical professionals and patient experts committed to progress, research, and collaboration in the field, to work on the many challenges and research questions faced by families, clinicians, and social agencies. The clinicians, scientists, and lay experts are organized into committees and working groups based on medical specialty and research interests and coordinated by the Steering Committee. The consortium’s administrative and event-planning needs are facilitated by The Ehlers-Danlos Society, but all work and opinions are independent and come solely from the consortium members. The Ehlers-Danlos Society hosts the Consortium’s International Symposium every two years.
Leading to the September 2018 International Symposium in Ghent, the Consortium’s work will be focused on developing a set of Common Data Elements (CDEs) to use as the basis for future collaborative research on the Ehlers-Danlos syndromes and related disorders.
CDEs are a list of specific types of data to be collected by researchers in the course of a study. CDEs may be as simple and general as age or gender. CDEs can also be in-depth or specific to the field of study, such as identifying the type of Ehlers-Danlos or Beighton score. When researchers in a field agree on a standardized set of CDEs, every study performed will collect the same baseline data in the same way. This allows our researchers to pool data collected across multiple studies, which more easily advances our knowledge.
The Common Data Element initiative in the US was spearheaded by the National Institute of Neurologic Diseases and Stroke (NINDS) of the National Institutes of Health. An overview of the NINDS CDE effort is available here.
A great deal of work establishing a wide-ranging set of CDEs has already been done by the larger scientific community. The International Consortium on EDS and Related Disorders will use many of these already codified CDEs, while allowing the Consortium’s committees and groups to develop CDEs for their specific areas of expertise. This is expected to lead to better research and new insights.