My experience at the EDS Society's LA Biobank
Hi Friends!
I had the opportunity to attend the EDS Biobank in Los Angeles. I’m actually an LA native, so the biobank procurement site was about 35 miles from me. But, if you’ve ever lived in LA, you know we measure by time and not miles, because those 35 miles meant 2 hours in traffic each way 😅
The event was at a hotel, which was a little humorous as I had shared my maps journey with my spouse and my arrival notice alerted them I arrived at a hotel, so there was a bit of confusion as to why I was at a hotel when I said I’d be at a biobank event 😂
As mentioned, it was inside a hotel. There were signs that directed you down into a hallway to where they were, and all the consenting, procurement, assessments, etc., occurred in hotel rooms. Most rooms had been modified in that the beds had been removed, and they only had desks and chairs.
There was an abundance of staff from the EDS Society, perhaps around 10 people total if considering all functions including clinicians. I went on the last day, and they said they had a good turnout, with around 100 people coming across the 5 days they were there. I only saw 1 other person donating samples while i was there.
The whole process took around an hour. First was consenting to giving saliva, urine, and blood. After, a doctor performed an intake assessment of my medical history and did a physical exam of the Beighton score and the 4 points currently in clinical testing to test systemic hypermobility. The doctor was incredibly well informed on EDS and asked direct questions while listening to my history. I never felt rushed and he took his time taking an appropriate history and patiently listening.
After the history and physical exam, they took blood and I gave urine and saliva. Honestly, giving 2 mL of saliva was a process as it takes some time to generate that much liquid. I sat in the room and talked with the staff as I politely spit into a vial 😂 Again, the staff was very nice and kept me company.
It was mentioned that they’ll likely hold another biobank in July while they’re in Texas for the symposium. They are also considering another at/near UPenn. I suggested Miami, FL, as there is also an EDS center there.
They highlighted that there is a reimbursement program. Per the email I received, you can be reimbursed up to $300 for travel and up to 1 night at a hotel to help facilitate donation; reimbursement is provided after you donate and can take 6-8 weeks after submission of receipts.
It was also encouraged that I sign up for the DICE registry, as I had not (have not, still need to do that 😬) https://www.ehlers-danlos.com/eds-global-registry/ This allows participation in more surveys, more information to be collected, and I was informed they can link your biobank sample to your DICE profile so your sample is matched for a more comprehensive research profile.
Overall, that was it! It was an easy process, and I think I can honestly say the worst part was the LA traffic.
Let me know if you have any questions!
**Edit**
Hi again!
Making a key edit to add that the EDS Biobank is not solely a hypermobility biobank nor is it just research for hEDS/HSD. The EDS Society has created the "EDS and HSD Biobank", and they're requesting all types of people to donate, including healthy controls with no hypermobility. https://www.ehlers-danlos.com/biobank/
The other registry listed, DICE (Data, Inclusion, Collaboration, and Excellence) is also an EDS and HSD registry https://www.ehlers-danlos.com/eds-global-registry/