International Primary Ciliary Dyskinesia (PCD) Registry

Trial statusRecruiting
Trial phaseNot listed
Trial typeObservational
Biological sexAll
AgeNot listed
SponsorUniversity Hospital Muenster

About this trial

The purpose of the international prospective PCD Patient Registry is to systematically measure, survey and compare different aspects of PCD manifestation, course and treatment, to provide data for epidemiological research and to identify special patient groups suitable for multi-center trials.

This International PCD Registry is also part of the European Reference Network ERN-LUNG. We follow the recommendations of the EU Expert Committee on Rare Diseases (EUCERD), which recommend an international interoperability of registries and databases to pool and exchange knowledge and data on rare diseases.

Eligibility criteria

Qualifiers

None

Disqualifiers

None

Trial design

Treatments tested in this trial

  • Not listed

Trial groups

2,000 Participants
are grouped into 1 trial group

Sponsors and collaborators

University Hospital Muenster

Lead sponsor

European Commission

Collaborator

University of Nicosia

Collaborator

Rigshospitalet, Denmark

Collaborator

KU Leuven

Collaborator

Hannover Medical School

Collaborator

Attikon Hospital

Collaborator

Amsterdam UMC, location VUmc

Collaborator

University of Bern

Collaborator

University of Southampton

Collaborator

Royal Brompton & Harefield NHS Foundation Trust

Collaborator

University of North Carolina

Collaborator

Ruhr University of Bochum

Collaborator

Federico II University

Collaborator

Hospital Vall d'Hebron

Collaborator

Medical University of Vienna

Collaborator

Marmara University

Collaborator

University Hospital, Martin

Collaborator

University of Pisa

Collaborator

Assistance Publique - Hôpitaux de Paris

Collaborator

University of Alberta

Collaborator

University of Giessen

Collaborator