European Cystinosis Cohort

Launched by INSTITUT NATIONAL DE LA SANTÉ ET DE LA RECHERCHE MÉDICALE, FRANCE · Jun 12, 2023

Keywords

ClinConnect Summary

The European Cystinosis Cohort study is looking to better understand cystinosis, a rare condition that affects how the body breaks down a substance called cystine. This disease can cause serious health problems, particularly in the kidneys, and often starts showing symptoms in infants. Thanks to advances in treatment, including a special medication and kidney transplants, many people with cystinosis are living longer, but they still face ongoing health challenges. This study aims to gather detailed information from patients across Europe to improve the care and treatment options available.

To participate in this study, you must have a confirmed diagnosis of cystinosis and be able to provide informed consent. The study is open to individuals of all ages and genders. As a participant, you can expect to share information about your health and quality of life, which will help researchers understand how to enhance care for everyone with this condition. This is a unique opportunity to contribute to important research that focuses on patient needs rather than just new medications.

Gender

ALL

Eligibility criteria

• Inclusion Criteria:
• • Confirmed diagnosis of cystinosis (based on cystine dosage, presence of crystals at eye examination or molecular diagnosis)
• • Signed informed consent
• Exclusion Criteria:
• • Patients not able to give their informed consent. No other criteria (patients with associated disease should be enrolled).