DICE Registry Data Requests

Introduction 

The Ehlers-Danlos Society DICE Global Registry is an extensive repository of demographic, morbidity, and co-morbidity data from people of all ages across the Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD). Providing rapid and cost-free access to a large community, the registry is rich with data for cohort and nested case-control studies and is suited to interpopulation comparisons. In addition, it provides access to specific groups, identified as required by their demographics and health concerns, for invited participation in new studies. We encourage you to consider the possibilities the DICE Registry can bring to your research, and we look forward to exploring opportunities to assist and collaborate with you in the support of the EDS and HSD community.

Associate Prof. Dr Alan Hakim
Chief Medical Officer and Co-PI DICE Global Registry
The Ehlers-Danlos Society 

Summary 

  • Researchers can apply for access to DICE Registry data at three different tiers. 
  • Institutional Review Board (IRB) approval is required for all DICE applications. 
  • Applicants should plan to describe and demonstrate their project in detail—changes to applications may result in delayed approval. 
  • Tier 3 applications will be subject to review by a committee of scientific and community representatives. 

What topics of research can DICE Registry Data be used for? 

All research using DICE Registry data should relate to EDS and/or HSD. No limitations to a specific area of expertise are currently in place, however, we encourage applicants to review the Research Roadmap to understand The Ehlers-Danlos Society’s research priorities and how their work may align with them.  

Background Information: DICE Global Registry 

The DICE Registry was launched in 2023. Since then, thousands of participants from around the world have shared their experiences to contribute to progressing research in EDS and HSD.  

Prior to DICE, The Ehlers-Danlos Society hosted its Global EDS & HSD Registry on other platforms. These platforms have since been retired, and our permanent platform has been in use throughout the process of building the DICE Registry.  

Why build a registry?

Registries are powerful tools for researchers and clinicians to understand multiple facets of a condition or disease. Particularly in the rare disease space, where sample size can be a challenge, registries represent a wealth of information that can have tremendous impact for researchers.  

How do I know which tier of access I should apply for?

Please carefully review the application information and data guide to ensure you apply for the correct tier. If you need further guidance, you can reach out to our team at registry@ehlers-danlos.com for additional assistance.  

I’m an independent researcher. Am I eligible?

Yes, independent researchers are eligible. However, independent researchers still need to demonstrate IRB approval. In some cases, The Society may be able to assist in providing information in this process. For questions, please reach out to registry@ehlers-danlos prior to making your application.  

I’m still developing my study, but I know what data I need. Can I apply before finalizing my study materials?

No, we require your study governance and protocol work to be finalized prior to application. Please apply when your materials are complete.  

My application wasn’t successful. Can I apply again in the future?

Yes, although we strongly recommend incorporating any feedback from the previous application round in your next application.  

The DICE EDS & HSD Global Registry is fully GDPR and HIPAA compliant, maintaining secure infrastructure in all activities including data storage and processing.

Further information can be found in the privacy policies below.

Sign up to The Ehlers-Danlos Society mailing list