For Patients
Our aim is to help development of new treatments for patients with Primary Ciliary Dyskinesia safely and efficiently, and therefore we have formed the Clinical Trial Network for Primary Ciliary Dyskinesia (PCD-CTN).For us it is important to involve patient/parent representatives in the network. We feel that it is mandatory to keep patient organizations informed about ongoing trials and activities of the network. Thus, we have 1 patient representative in our steering committee and 3 in the protocol review committee. Furthermore, we have regular meetings with patient representatives.
ERN-LUNG POPULATION REGISTRY
Within ERN-LUNG, a population registry (https://www.popreg.ern-lung.eu) has been implemented. The aim of PCD registries are to facilitate recruitment of patients with Primary Ciliary Dyskinesia for clinical studies, to provide data for epidemiological research and to determine characteristics of PCD manifestation. With this initiative patients interested in participating in clinical trials, disease specific registries and research projects can register in the system and will be contacted by experts from the ERN-LUNG CORE that covers the patient´s disease area such as PCD. This Population Registry is open to all interested patients and not restricted to specific countries.