Rare disease registry aims to improve cystinosis care across europe
NCT ID NCT05901077
First seen Feb 12, 2026 · Last updated May 06, 2026 · Updated 15 times
Summary
This study is building a large European database of people with cystinosis, a rare genetic disease that causes cystine buildup in cells. Researchers will collect medical and quality-of-life data from about 400 participants to better understand the disease and improve patient care. The goal is to track outcomes and identify where treatments can be improved.
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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.
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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Study contacts
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Contact
Phone: •••-•••-•••• Email: •••••@•••••
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Contact
Email: •••••@•••••
Locations
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RaDiCo-ECYSCO
RECRUITINGParis, Île-de-France Region, 75012, France
Contact
Contact Phone: •••-•••-•••• Email: •••••@•••••
Conditions
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