Research team
Institute of Social and Preventive Medicine (ISPM), University of Bern, Switzerland
Project leader: Claudia Kuehni
Claudia Kuehni is a Paediatric Pulmonologist and Professor at the ISPM Bern. She conducts research into causes, treatments, and prognosis of diseases in childhood, in particular respiratory diseases, rare diseases, and cancer.
Role: leads the project, has overall responsibility, guidance in epidemiology and paediatric pulmonology
Project coordinator: Leonie Schreck
Leonie Schreck is a PhD student at the ISPM .
Role: plans, conducts, and coordinates the study together with C. Kuehni and M. Goutaki, responsible for the management, analyses, and communication.
PCD epidemiologist: Myrofora Goutaki
Myrofora Goutaki is Senior researcher at the ISPM Bern where she leads a project on ear, nose, and throat (ENT) problems in people with primary ciliary dyskinesia.
Role: collaborator and advisor (paediatric respiratory epidemiology and PCD studies).
Collaborators and advisors
Epidemiologist: Eva Pedersen
Eva Pedersen is a researcher with a PhD in epidemiology. She has expertise in paediatric respiratory epidemiology and conduct of clinical and epidemiological studies.
Role: collaborator and advisor
PCD clinical researcher: Jane Lucas
Jane Lucas is a Professor of Paediatric Respiratory Medicine at University of Southampton. She leads the national PCD centre in Southampton and has particular expertise in PCD diagnostics.
Role: Collaborator and advisor (Paediatric Pulmonology, PCD diagnostics).
PCD specialist nurse: Amanda Harris
Amanda Harris is a nurse specialist at the Southampton Children’s Hospital. She has broad expertise in care of patients with PCD, and in research relevant for clinical practice and care.
Role: Collaborator and advisor (PCD specialist nursing, use-inspired research)
PCD support organisations
Australia: PCD Australia Primary Ciliary Dyskinesia
Website:
https://pcdaustralia.org.au/
Contact: Catherine Kruljac
admin@pcdaustralia.org.au
Germany: Verein Kartagener-Syndrom und PCD
Website:
https://www.pcd-ks.info/UeBER-UNS
Contact: Hansruedi Silberschmidt
schriftfuehrer@pcd-ks.info
UK: PCD Support UK
Website:
http://pcdsupport.org.uk
Contact: Katie Dexter
chair@pcdsupport.org.uk
USA: PCD Foundation
Website:
http://pcdfoundation.org
Contact: Michele Manion
michelemanion@gmail.com
Switzerland: Sebsthilfegruppe Kartagener Syndrom und Primäre Ciliäre Dyskinesie
Contact: Susanne Grieder
grieder.susanne@gmail.com
Italy: Associazione Italiana Discinesia Ciliare Primaria Sindrome di Kartagener APS
Website:
https://www.pcdkartagener.it/
Contact: Letizia Andolfi, Sara Bellu
presidente@pcdkartagener.it
Spain: Asociación Nacional de Pacientes con Discinesia Ciliar Primaria
Facebook: https://www.facebook.com/discinesia.dcpespana
Contact: Trini López
asociaciondcpes@gmail.com
France: Association Dyskinésie Ciliaire Primitive ADCP
Website: http://www.adcp.asso.fr/
Contact: Isabelle Cizeau, Emilie Wattellier
sec.adcp.asso@gmail.com