welcome to oneEDSvoice

- a positively charged Ehlers Danlos Syndrome community.
  • join today!

The EDS International Consortium identifies common data elements as next collaborative goal for 2018

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.