The Ehlers-Danlos Society is developing an Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD) Biobank, thanks to a generous $2.5 million donation. Part of an overall $6.7 million donation to research 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).
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.
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.
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:
We invite you to learn more about an opportunity to participate in biobank research taking place in Philadelphia, PA, this November.
As part of The Ehlers-Danlos Society’s Global EDS and HSD Biobank, we are collecting biological samples and health information from individuals with different health backgrounds to support vital research into Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD).
If you are eligible, participation includes:
We are looking for individuals from three groups:
Including a broad range of participants allows researchers to compare findings across different populations and gain a clearer understanding of EDS and HSD.
Your participation may help researchers better understand EDS and HSD at the genetic, protein, and tissue level. The information collected may support:
Participation is voluntary, and your information will be kept secure and confidential.
Appointment spaces are now full. Please subscribe to our Newsletter for updates on future events.
The Ehlers-Danlos Society’s Global EDS and HSD Biobank is a research initiative collecting biological samples and health information from individuals with a variety of health backgrounds. The biobank supports research into Ehlers-Danlos syndromes (EDS), hypermobility spectrum disorders (HSD), and related conditions.
If you are eligible and choose to participate, the study may involve donating:
Samples are used for future research to help better understand EDS and HSD at a genetic, tissue, and molecular level.
No. Participation is voluntary, and you are not required to provide all types of samples. You can discuss your preferences with the research team. For example, you may choose to give a urine sample but not blood or skin.
The study is open to people in three groups:
Including a variety of participants allows researchers to compare findings and study how EDS and HSD may differ from other conditions or from general health.
Eligible participants will be scheduled for a one-time appointment during this time frame.
If you are eligible, participation includes:
A member of the research team will review everything with you before any samples are collected.
If you’re interested, please complete the interest form here, and a research team member will contact you with more details about eligibility and next steps.
Yes. All health and personal information you provide will be kept secure and confidential in accordance with ethical research standards and data protection policies.
No. This is a research study, not a clinical or diagnostic service. While the study may contribute to future advances in diagnosis or treatment, it is not intended to provide individual medical care or advice.
Please email questions to [email protected].
We understand that travel distance can be a challenge. If you are unable to attend Philadelphia, please keep an eye on our website and social media channels for announcements of future recruitment events in other regions.
At this time, participation requires attending an in-person event because biological samples need to be collected under research governance standards. We are exploring ways to expand participation opportunities over time.
We selected Philadelphia after reviewing data from our DICE Global Registry and our website traffic analytics, which highlighted areas where many of our community members are located. Philadelphia was identified as a key location “hotspot” and offers suitable clinical and logistical facilities for safely carrying out study procedures in compliance with Good Clinical Practice (GCP).
We plan to host future events in other locations, both in the U.S. and internationally, to make participation easier for as many people as possible.
Your visit will last approximately 90 minutes, if you register your interest a member of our team will be in touch with you to provide you a link that allows you to book an appointment slot. Slots are available from 8:30 am- 4:30 pm.
If you are unable to find an available appointment time, it is likely that all current slots are full. Appointment numbers are limited to ensure that each participant receives adequate time and attention from the study team.
Please do not travel to the event without a confirmed appointment, as we can only see participants who have scheduled time slots.
Appointment availability may change if others who have already booked need to cancel or reschedule, so we recommend checking back periodically to see if a suitable time becomes available.
