New EDS registry aims to unlock secrets of rare connective tissue disorder
NCT ID NCT04133272
First seen Jun 27, 2026 · Last updated Jun 27, 2026
Summary
This study is building a large registry of up to 3,000 people with Ehlers-Danlos syndrome (EDS) in Italy. Researchers will collect medical history, genetic data, and quality-of-life information to better understand how EDS affects people over time. No new treatments are being tested; the goal is to gather knowledge to improve future care.
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Conditions
The condition(s) this trial relates to.
As listed by the trial registrant
The condition terms exactly as the trial's registrant entered them.
Contacts and locations
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Study contacts
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Contact
Phone: •••-•••-•••• Email: •••••@•••••
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Contact
Phone: •••-•••-•••• Email: •••••@•••••
Locations
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Irccs Istituto Ortopedico Rizzoli
RECRUITINGBologna, Emilia-Romagna, 40136, Italy
Contact Phone: •••-•••-•••• Email: •••••@•••••
Contact Phone: •••-•••-•••• Email: •••••@•••••
More trials for these conditions
Other studies related to the condition(s) this trial covers.
- Joint surgery outcomes in Ehlers-Danlos syndrome put to the test
- Sugar water shots may ease back pain in Bendy-Bodied patients
- Gene hunt for EDS: could saliva replace blood tests?
- EDS Patients' numbing shots put to the test
- Scientists probe muscle secrets in rare connective tissue disorders
- Ear stimulation device shows promise for Ehlers-Danlos relief