Research team
Institute of Social and Preventive Medicine (ISPM), University of Bern, Switzerland
Study 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 study, has overall responsibility, guidance in epidemiology and paediatric pulmonology
Project leader: Myrofora Goutaki
Myrofora Goutaki is a clinical epidemiologist and Professor at the ISPM Bern where she leads a study on ear, nose, and throat (ENT) problems in people with PCD and several other studies focused on PCD. She is the co-chair of the BEAT-PCD network.
Role: She leads several research projects e.g. on mental health and social functioning within the Living with PCD study, and she is a senior team member and advisor (paediatric respiratory epidemiology and PCD studies) since the beginning of the study.
Project coordinator: Andrea Fernandez-Rodriguez
Andrea Fernandez-Rodriguez is a trained clinical psychologist and a PhD student in Epidemiology at the ISPM in the research team of rare diseases.
Role: plans, conducts, and coordinates the study together with C. Kuehni and M. Goutaki, responsible for the management, analyses, and communication.
Postdoctoral research fellow: Nena Karavasiloglou
Nena Karavasiloglou is a chronic disease epidemiologist, nutrition scientist and a postdoctoral research fellow at ISPM Bern in the research team of rare diseases.
Role: Contributes to research projects within the Living with PCD study and develops own projects on nutrition.
Current and former collaborators
Amanda Harris, PCD and Children’s Respiratory Nurse Specialist at University Hospital Southampton, UK.
Sophie Christin‐Maitre, Professor of Endocrinology at Sorbonne University, France.
Jane Lucas, Professor of Paediatric Respiratory Medicine at University of Southampton, UK.
Bernard Maitre, Professor of Pulmonology at Paris University of Est Créteil, France.
Nathalie Massin, Clinical coordinator of Reproductive Medicine services at American Hospital of Paris, France.
Francesco Pagnini, Professor of Clinical Psychology at Università Cattolica del Sacro Cuore, Italy.
Eva Pedersen, PhD in epidemiology (former Living with PCD study team member at ISPM Bern).
Leonie Schreck, MD PhD in epidemiology (former Living with PCD study team member at ISPM Bern).
Sofia Zambrano, Professor and research group head at ISPM Bern with expertise on qualitative and mixed methods 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 and Canada: 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
rech.adcp.asso@gmail.com