Rare disease database aims to boost cystinosis care across europe
NCT ID NCT05901077
First seen Jun 26, 2026 · Last updated Jun 27, 2026 · Updated 1 time
Summary
This European study will follow 400 people with cystinosis, a rare genetic disease that causes cystine buildup in cells. Researchers will collect medical and quality-of-life data to understand how the disease progresses and how care can be improved. The study does not test any new treatment but aims to provide insights that could lead to better management of the condition.
What this could mean
Our plain-language read of the trial. This is informational only — not medical advice or a prediction.
What this could lead to
If successful, this study could help doctors better understand cystinosis and improve care guidelines for patients across Europe.
What could go wrong
This is an observational study, not a treatment trial. It will not test any new drug or therapy, so direct patient benefits are limited.
Disclaimer
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This is a summary of
the original study
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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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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
Email: •••••@•••••
Locations
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RaDiCo-ECYSCO
RECRUITINGParis, Île-de-France Region, 75012, France
Contact
Contact Phone: •••-•••-•••• Email: •••••@•••••