Published: 01/02/2023 Tags: The Ehlers-Danlos Society News

The Ehlers-Danlos Society Launches The New DICE EDS and HSD Global Registry

In order to continue to research for our future, we are delighted to announce the launch of our new DICE EDS and HSD Global Registry hosted on REDCap, which will allow the EDS and HSD community to take part in current and future research.

The DICE EDS and HSD Global Registry is an important tool in collaborative research. It will allow members of the EDS and HSD community to complete surveys and share medical information, in order to assist with research into the Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD).

The registry will help researchers throughout the world to advance understanding of the EDS, HSD, and related symptoms and conditions, through use of the registry data and by sharing new surveys for registry members to participate in.

Each person who joins will help:

  • Map the experiences of those living with EDS and HSD, globally.
  • Enable the gene search for hypermobile EDS (hEDS) and hypermobility spectrum disorders.
  • Facilitate research into the frequency of related symptoms and conditions, which may be associated with the various types of EDS and HSD.
  • Discover new types of EDS or HSD.
  • Understand the relationships between EDS and HSD, and chronic pain, anxiety, and other problems such as neurological, mast cell, gastrointestinal, and autonomic disorders.

The DICE Registry is accessible globally, and participation is free to all. Learn more and join today.

What if I have joined the registry before?

If you registered in PEER 

You are already in the DICE EDS and HSD Global Registry; however, the questions have been reorganized and updated to provide enhanced quality and specificity for researchers. To take part in the DICE Global Registry, you should use the individualized link sent to you via email and NOT the public link you may see on social media and/or The Ehlers-Danlos Society website.

If you registered in Luna DNA   

You will still be able to access your information via your own LunaDNA account, however this data is not part of the DICE EDS and HSD Global Registry. You will need to re-register on REDCap to take part in the DICE Global Registry.

For more information about the DICE EDS and HSD Global Registry, please see our FAQ section.

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