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: Eva Pedersen
Eva Pedersen is a researcher at the ISPM with a PhD in epidemiology. She has expertise in paediatric respiratory epidemiology and conduct of clinical and epidemiological studies.
Role: plans, conducts, and coordinates the study together with C. Kuehni and L. Schreck, responsible for the management, analyses, and communication
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 E. Pedersen, 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).
Research assistant: Lara Pissini
Lara Pissini is a research assistant at the ISPM.
Role: supports the study team in the communication and management of the study.
Collaborators and advisors
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)
Clinical psychologist: Gisela Michel
Gisela Michel is a professor in Health Psychology at the University of Fribourg, Switzerland. She is an expert in health psychology, patient-centered studies, questionnaire design and mixed methods studies.
Role: Collaborator and advisor (Clinical psychology and mixed methods)
PCD support organisations
Australia: PCD Australia Primary Ciliary Dyskinesia
Contact: Catherine Kruljac
Germany: Verein Kartagener-Syndrom und PCD
Contact: Hansruedi Silberschmidt
UK: PCD Support UK
Contact: Lucy Dixon
USA: PCD Foundation
Contact: Michele Manion
Switzerland: Sebsthilfegruppe Kartagener Syndrom und Primäre Ciliäre Dyskinesie
Contact: Susanne Grieder
Italy: Associazione Italiana Discinesia Ciliare Primaria Sindrome di Kartagener APS
Contact: Letizia Andolfi, Sara Bellu
Spain: Asociación Nacional de Pacientes con Discinesia Ciliar Primaria
Contact: Trini López
France: Association Dyskinésie Ciliaire Primitive ADCP
Contact: Isabelle Cizeau