European cystinosis patient follow-up study
Part of Genetic & congenital, Hormones & metabolism clinical trials.
This study follows people with confirmed cystinosis to better understand the condition. It mainly checks that you have the right diagnosis and can join voluntarily.
Summary written for real people, not researchers, by Clin2.
Who can take part
- You have a confirmed diagnosis of cystinosis
- Confirmation can be from cystine level tests, eye crystal findings, or genetic testing
- You are able to understand the study and give informed consent
Quick eligibility check
Answer a few plain-language questions, based on this study's own requirements, to get a preliminary sense of fit.
Similar studies
Other trials that look related to this one.
This study is a follow-up registry for people with cystinosis to track their health over time. It helps doctors learn more about the condition and how it affects daily life, without giving any new treatments.
This study checks how people with cystinosis are doing long-term after finishing an earlier study medicine called CTNS-RD-04. It may help researchers understand the lasting effects and safety of that treatment over time.
This study tests a new medicine called TTI-0102 for cystinosis. It aims to see if it can help manage cystine levels in the body, which may reduce kidney and other organ damage.
This trial looks at the use of cysteamine to treat cystinosis, a rare inherited condition. It may help lower harmful cystine buildup in the body and improve outcomes, especially early in life.
This study looks at how cystinosis affects the energy centers (mitochondria) in your cells. It may help doctors understand how cysteamine treatment works in patients with kidney cystinosis.
This study aims to find new treatment targets for nephronophthisis and related kidney ciliopathies. Researchers will collect blood and urine samples from people with these conditions, their healthy relatives, and other volunteers to better understand the disease.
Hear when a new Cystinosis trial opens
We’ll email you when one opens — at most once a week, no account needed, unsubscribe anytime.