New european study aims to unlock secrets of rare kidney disease
NCT ID NCT05901077
First seen Feb 12, 2026 · Last updated May 20, 2026 · Updated 17 times
Summary
This study is gathering health information from 400 people with cystinosis, a rare genetic disease that causes cystine buildup and damages organs, especially the kidneys. By collecting data on symptoms, treatments, and quality of life, researchers hope to identify ways to improve care and outcomes for patients across Europe. Participants will not receive a new treatment but will help build a valuable knowledge base for future care.
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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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Contacts and locations
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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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