TABLE 1

Primary ciliary dyskinesia (PCD) registries or cohort studies in Europe with national or near-national coverage: characteristics and patient identification

CharacteristicsInclusion criteria and informed consentPatient identificationFundingHost institution
Danish PCD RegistryNational (Denmark), population based. Founded 2006.Inhabitants of Denmark with definite, highly likely or suspected PCD. Written informed consent needed.Passive, patients who are referred to the national PCD centre for diagnostic work-up or clinical management.Hospital based, but various funds have supported part-time management.Paediatric Pulmonary Service, Dept of Paediatrics and Adolescent Medicine, Copenhagen University Hospital, Rigshospitalet, Copenhagen, Denmark.
www.dblc.dk
Cyprus PCD RegistryNational (Cyprus), population based. Founded 2013.Inhabitants of Cyprus and neighbouring countries diagnosed or followed-up in Cyprus. Written informed consent needed.Passive, patients who are referred to the national PCD centre for diagnostic work-up or clinical management.National research funding (Cyprus Research Promotion Foundation).Medical School, University of Cyprus, Nicosia, Cyprus.
www.ucy.ac.cy/medical
Swiss PCD RegistryNational (Switzerland), population based. Founded 2013.Inhabitants of Switzerland with definite, highly likely or suspected PCD. Written informed consent needed.Active, by contacting regularly all specialists (paediatric and adult pulmonologists, ENT physicians, and fertility specialists) and the national patient organisation.Swiss National Science Foundation, cantonal lung leagues, Foundation Milena Carvajal.Institute of Social and Preventive Medicine, University of Bern, Bern, Switzerland.
www.ispm.ch
Norwegian PCD RegistryNational (Norway), population based. Founded 2015.Inhabitants of Norway with definite or highly likely PCD. Baseline data without informed consent; written informed consent needed to share data.Passive, by inclusion of patients referred with suspected PCD. Active from September 2019, by contacting regularly all specialists (paediatric and adult pulmonologists, ENT physicians, and fertility specialists).National Advisory Unit on Rare Diseases. Norwegian Resource Centre for Cystic Fibrosis.Norwegian Resource Centre for Cystic Fibrosis, Oslo, Norway.
www.oslo-universitetssykehus.no/nscf
English Paediatric PCD Management ServiceNational (England), clinical cohort. Founded 2012.Inhabitants of England, aged 0–17 years with definite or highly likely PCD. Written informed consent needed.Through the National PCD Diagnostic Service, comprised of three centres.#National Health Service (NHS) England.National PCD Service; each centre is owner of their patients' data.#
French RaDiCo-PCD CohortNational (France), clinical cohort. Founded 2017.Inhabitants of France with definite PCD. Written informed consent needed.Active, by contacting regularly all specialists (paediatric and adult pulmonologists, ENT physicians, and fertility specialists) and the national patient organisation.French National Research Agency under the specific programme “Investments for the Future”.Inserm UMR S 933 RaDiCo-PCD, Paris, France.
www.radico.fr/fr/connaitre-radico/nos-cohortes-et-autres-programmes-associes/80-radico/147-cohorte-radico-pcd

ENT: ear, nose and throat. #: University Hospital Southampton NHS Foundation Trust, Southampton, UK/Royal Brompton and Harefield Foundation Trust, London, UK; University Hospitals of Leicester NHS Trust, Leicester, UK/Birmingham Children's Hospital, Birmingham, UK; Leeds Teaching Hospitals NHS Trust, Leeds, UK/Bradford Teaching Hospitals NHS Trust, Bradford, UK.