International Primary Ciliary Dyskinesia (PCD) Registry

Summary

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.

Conditions

• Primary Ciliary Dyskinesia (PCD)

Sponsors & Collaborators

• European Commission

  collaborator OTHER

• University of Nicosia

  collaborator OTHER

• Rigshospitalet, Denmark

  collaborator OTHER

• KU Leuven

  collaborator OTHER

• Hannover Medical School

  collaborator OTHER

• Attikon Hospital

  collaborator OTHER

• Amsterdam UMC, location VUmc

  collaborator OTHER

• University of Bern

  collaborator OTHER

• University of Southampton

  collaborator OTHER

• Royal Brompton & Harefield NHS Foundation Trust

  collaborator OTHER

• University of North Carolina

  collaborator OTHER

• Ruhr University of Bochum

  collaborator OTHER

• Federico II University

  collaborator OTHER

• Hospital Vall d'Hebron

  collaborator OTHER

• Medical University of Vienna

  collaborator OTHER

• Marmara University

  collaborator OTHER

• University Hospital, Martin

  collaborator OTHER

• University of Pisa

  collaborator OTHER

• Assistance Publique - Hôpitaux de Paris

  collaborator OTHER

• University of Alberta

  collaborator OTHER

• University of Giessen

  collaborator OTHER

• University Hospital Muenster

  lead OTHER

Eligibility

Sex

ALL

Healthy Volunteers

No

Timeline & Regulatory

Start

2014-01-31

Primary Completion

2030-12-31

Completion

2030-12-31

Countries

• Germany

Study Locations