New registry aims to unlock secrets of Ehlers-Danlos syndrome

NCT ID NCT04133272

First seen Nov 20, 2025 · Last updated May 18, 2026 · Updated 23 times

Summary

This study is building a large database of medical and genetic information from up to 3,000 people with Ehlers-Danlos syndrome (EDS). The goal is to track how the disease progresses over time and find links between genes and symptoms. Participants' data will be collected from medical records and linked to biological samples when available. Currently, only people living in Italy can join.

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This is a summary of the original study . Summaries may miss details or leave out important information. Before applying or accepting participation, make sure you have read and understood the full study. Curemydisease.com takes no responsibility whatsoever for anything missed, misunderstood, or acted upon as a result of our summary — we know it does not capture everything.

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Contacts and locations

Study contacts

  • Contact

    Phone: •••-•••-•••• Email: •••••@•••••

  • Contact

    Phone: •••-•••-•••• Email: •••••@•••••

Locations

  • Irccs Istituto Ortopedico Rizzoli

    RECRUITING

    Bologna, Emilia-Romagna, 40136, Italy

    Contact Phone: •••-•••-•••• Email: •••••@•••••

    Contact Phone: •••-•••-•••• Email: •••••@•••••

Conditions

Explore the condition pages connected to this study.