About us

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


Contact: Catherine Kruljac

Germany: Verein Kartagener-Syndrom und PCD


Contact: Hansruedi Silberschmidt

UK: PCD Support UK


Contact: Katie Dexter

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

France: Association Dyskinésie Ciliaire Primitive ADCP

Website: http://www.adcp.asso.fr/

Contact: Isabelle Cizeau, Emilie Wattellier