The Ehlers-Danlos Society Global Ehlers-Danlos Syndromes (EDS) and Hypermobility Spectrum Disorders (HSD) Biobank 


The Ehlers-Danlos Society is excited to announce the development of an EDS and HSD Biobank. Thanks to a generous $2.5 million donation from the Mike and Sofia Segal Foundation, this biobank represents a significant advancement for researchers studying Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD). 

What is the biobank? 

The biobank is made up of two key parts. The first is secure storage of biological samples such as blood, tissues like skin and muscle, and urine from each person participating in the biobank. From these samples, it is possible to extract things like genetic material, and proteins for research. The second part is the collection of information about each participant. This includes things like their age, gender, ethnicity, diagnosis, health concerns, and lifestyle. 

The samples will come from people diagnosed with a type of EDS or HSD, people who have chronic pain and fatigue syndromes but who do not have EDS or HSD, and from people who are healthy. By collecting information from these other groups researchers can compare findings with EDS or HSD. These other groups are called “controls” in case-control studies. This helps researchers identify whether their findings are general ones or apply specifically to EDS or HSD.  

What will the biobank be used for? 

The biobank will be a crucial resource for learning more about the types of EDS and HSD. It will help researchers study these conditions to find better ways to diagnose, treat, and care for people with them. By giving scientists access to a variety of biological samples and information about people’s health concerns, it lets them dig deeply into what causes these conditions and how to help people who have them. 

How will the biobank help research? 

The biobank will advance medical research by providing scientists with samples that they can use to better understand EDS and HSD at a genetic, protein, and tissue level. This can help researchers find new treatments for these conditions. 

Research can help us in: 

  • Supporting Biomarker Discovery: Biomarkers are molecules that signal normal or abnormal bodily processes. Identifying biomarkers for EDS and HSD could eventually help doctors diagnose these conditions earlier, assess a person’s risk to specific symptoms, and monitor their response to therapies. 
  • Understanding Disease Progression: By looking at samples collected over time, researchers can see how these conditions change and what factors might make them worse or better. 
  • Facilitating Drug Development and Clinical Trials: Having access to many samples helps speed up the process of finding and testing new treatments for EDS and HSD. 
  • Personalized Medicine: Findings from the biobank research can be used to advance personalized medicine, which is the individualizing of treatment to the unique characteristics of each person.
  • Fostering Collaboration and Data Sharing: The biobank will bring researchers together from all over the world to share what they find, helping everyone work together to solve these medical puzzles faster.

When will the biobank be open? 

Work is underway to develop the biobank.  

Starting in the summer of 2024, the biobank will start a phased program working with researchers and clinicians worldwide undertaking specific and approved researched studies to collect data and samples. Unlike the HEDGE (Hypermobile Ehlers-Danlos Genetic Evaluation) study and the DICE EDS and HSD Global Registry, members of the community will not be able to directly apply to participate in the biobank. In late 2024, the biobank will open access to samples and data for researchers to use for their studies.  

Over the new few years, the biobank will continue to grow, supporting ongoing vital research. 

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