Rare disease database aims to boost cystinosis care across europe
NCT ID NCT05901077
First seen Jun 26, 2026 · Last updated Jul 08, 2026 · Updated 3 times
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.
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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
Locations
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RaDiCo-ECYSCO
RECRUITINGParis, Île-de-France Region, 75012, France
More trials for these conditions
Other studies related to the condition(s) this trial covers.
- Scientists launch Largest-Ever study to unravel Cystinosis's Long-Term effects
- Newborn screening study aims to catch rare diseases at birth
- Scientists investigate why cystinosis affects skin color
- Experimental gene therapy aims to fix cystinosis at the source
- Cystinosis study probes medication adherence and brain risks
- Cystinosis drug under Long-Term watch: could cysteamine be key?