What do you think is the biggest disconnect between the clinic and research when it comes to hEDS?
Here are my thoughts:
- many things are “known EDS things” that EDS providers see. But this data often isn’t published or easily accessible by researchers so there is no follow up on why and how those things happen
- many things are “known EDS things” that EDS providers see. But this data often isn’t published or easily accessible by researchers so there is no follow up on why and how those things happen
- genetics often stops with clinical geneticists and doesn’t reach a lab that can follow up with biology
- a lack of continuity of care so patients see multiple specialists that don’t always know the whole picture outside of their speciality, which is then missing from research
- a lack of continuity of care so patients see multiple specialists that don’t always know the whole picture outside of their speciality, which is then missing from research
Why is this happening? I think it’s:
1. Providers who do specialize are overworked
2. Lack of funding
3. Not enough education
4. Lack multidisciplinary clinics/institutes for clinical care & research
5. Not much established work to base studies on- starting from nothing is hard
1. Providers who do specialize are overworked
2. Lack of funding
3. Not enough education
4. Lack multidisciplinary clinics/institutes for clinical care & research
5. Not much established work to base studies on- starting from nothing is hard
What are your thoughts? And HOW do we improve this?
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