DCP (RaDiCo Cohort) (RaDiCo-DCP)

Launched by INSTITUT NATIONAL DE LA SANTÉ ET DE LA RECHERCHE MÉDICALE, FRANCE · Jul 18, 2023

Keywords

ClinConnect Summary

The RaDiCo-DCP clinical trial is studying Primary Ciliary Dyskinesia (PCD), a rare condition that affects the movement of tiny hair-like structures called cilia in the respiratory system. These cilia help clear mucus and keep the airways healthy. People with PCD often experience frequent respiratory infections from a young age and may face other challenges, such as infertility and breathing difficulties. The goal of this trial is to gather information about patients with PCD to better understand the severity of the condition, improve patient care, and explore how different genetic factors influence PCD.

To participate in this study, individuals must have a confirmed diagnosis of PCD, which can be based on specific genetic tests or certain physical characteristics of their cilia. They should also have had at least one follow-up appointment with a healthcare provider regarding their condition. Participants can expect to contribute to a database that will help researchers learn more about PCD, including its impact on quality of life and potential treatments. This study is currently recruiting patients of all ages and genders who meet the eligibility criteria.

Gender

ALL

Eligibility criteria

• Inclusion Criteria:
• • Patient fulfilling at least one of the following criteria for PCD confirmed diagnosis: Kartagener's syndrome and/or specific anomaly of the ciliary ultrastructure and/or an unambiguous mutation in a PCD gene
• • Having at least one annual follow-up visit
• Non-inclusion Criteria:
• • Patients with an unconfirmed diagnosis of PCD
• • Patients with an evolving concomitant pathology that may interfere with the assessment of PCD-related manifestations