Pediatric Respiratory Epidemiology Group

Group leader: Prof. Dr. med. Claudia Kuehni

The Paediatric Respiratory Epidemiology Group studies the epidemiology of frequent and rare respiratory disorders during childhood and over the life course. Main areas of interest are asthma and other wheezing disorders, chronic cough, cystic fibrosis, and primary ciliary dyskinesia (PCD).

We conduct population-based and clinical cohort studies (Swiss Paediatric Airway Cohort, Living with PCD, and the ENT Prospective International PCD cohort) and manage national databases and registries, such as the Swiss Primary Ciliary Dyskinesia Registry and the Swiss database of neonatal screening for cystic fibrosis. We also participate in collaborative national and international studies, such as the Bern Basel Infant Lung Development (BILD) cohort and the BEAT-PCD clinical research collaboration of the European Respiratory Society.

Research topics include the public health impact of respiratory disease, the role of behavioural and environmental influences on the development of respiratory disorders, disease phenotype definition, prediction of clinical course and long-term outcomes, and healthcare research. We also perform national physician surveys to better understand the diagnosis and treatment of respiratory diseases and conduct participating research together with people affected by respiratory diseases.

Group leader

Group members

Swiss Paediatric Airway Cohort (SPAC)

Claudia Kuehni, Mari Sasaki, Ronny Makhoul, Tayisiya Krasnova, Beatriz Guerra Buezo, Franco Romero, Mandukhai Ganbat, Myrofora Goutaki

SPAC is a national, multicentre clinical cohort study with a longitudinal design enabling repeated health data collection. The study includes children aged 0-16 years who are referred to a respiratory outpatient clinic in Switzerland for wheeze, recurrent cough or exercise-related respiratory problems. Our team collects data on symptoms, health behaviours and environmental exposures through parental questionnaires. We additionally extract medical data from outpatient hospital records, including clinical test results (e.g., lung function, allergy tests) and information on diagnosis and treatment. The SPAC study started in 2017 and currently includes over 4100 children from 10 pulmonary outpatient clinics and private practices in Aarau, Basel, Bern, Chur, Horgen, Lausanne, Luzern, St. Gallen, Worb and Zurich. SPAC aims to describe the spectrum of respiratory symptoms and problems among children, to evaluate and harmonise diagnostic practices between outpatient pulmonary clinics, and to build short- and long-term prediction models for asthma control, asthma attacks, and disease persistence versus remission. The project is funded by the Swiss National Science Foundation (SNF 320030_212519).

LuftiBus in the school (LUIS)

Claudia Kuehni, Rebeca Mozun, Myrofora Goutaki, Lorenz Leuenberger

LUIS is a cross-sectional and school-based study on the respiratory health of 6 to 17-year-old children in collaboration with the Children’s hospital in Zurich and Bern. A bus with equipment for lung function testing visited numerous schools across the whole canton of Zurich, Switzerland, in 2013-16. The study collected information from questionnaires to parents and children on upper and lower respiratory symptoms, asthma diagnosis and treatment, and lifestyle characteristics like smoking, and measured weight and height, lung function, and airway inflammation in children. The project was funded by Lunge Zürich.

Living with PCD (Primary Ciliary Dyskinesia)

Claudia Kuehni, Leonie Schreck, Myrofora Goutaki

Formerly known as COVID-PCD (COVID-19 infections in people with Primary Ciliary Dyskinesia), the renamed Living with PCD is an international participatory research project open to people of any age from anywhere in the world with reported PCD. The study allows people with PCD to have an active voice in all stages of research, including the suggestion of research topics, project design and interpretation and communication of results. Living with PCD is internationally advertised through patient support groups, and participants register online and provide digital consent ( The project originally focused on COVID-19 incidence, and other emerging questions of interest related to COVID-19 such as use of face masks or COVID vaccinations. Subsequently, Living with PCD has evolved to answer broader questions unrelated to COVID-19 such as physical activity behaviour, frequency of fertility problems, progression of symptoms over time and incidence of pulmonary exacerbations. Results from participant-contributed data are continuously analysed and summaries are published on the study website and through regular newsletters. Additional thematic questionnaires focusing on emerging questions of interest related to the PCD community will be based on direct participant input. The study was approved by the cantonal ethics committee of Bern (2020-00830).

ENT prospective international cohort for people with Primary Ciliary Dyskinesia (EPIC-PCD)

Myrofora Goutaki

EPIC-PCD is a prospective multi-centre cohort embedded in routine clinical care in collaboration with 13 European PCD centres from 10 countries, hosted at ISPM Bern. It aims to characterise ENT (ear, nose, throat) disease in PCD patients of all ages, study how this is associated with lower respiratory disease, and identify determinants of disease prognosis. The study collects detailed data on symptoms, health-related behaviours, and quality of life from patient and parental questionnaires and medical data from clinical examinations, using the standardised FOLLOW-PCD form and questionnaire. The set-up of the cohort was funded by an Ambizione grant from the Swiss National Science Foundation (SNF PZ00P3_185923).

Mixed-method studies in the field of PCD

Myrofora Goutaki, Leonie Schreck, Claudia Kuehni

We lead several national and international mixed method studies that combine qualitative and quantitative analytical approaches to assess perspectives of important stakeholders, including researchers, clinicians, and people with PCD and their families. Studies focus on important issues related to PCD research and clinical care, including defining research priorities for PCD, assessing barriers to research and studying the burden of treatments and care management among people with PCD.

BEAT-PCD Clinical Research Collaboration

Myrofora Goutaki, Claudia Kuehni

The BEAT-PCD Clinical Research Collaboration (CRC) is a network of multidisciplinary researchers and clinicians funded in 2020 by the European Respiratory Society. The network coordinates research from basic science to clinical care, with the ultimate goal to improve diagnosis and develop treatments that lead to improvements in long-term outcome of patients with PCD. M. Goutaki co-chairs the network and C. Kuehni is a member of the management committee. Within the BEAT-PCD framework, we develop numerous collaborative research projects, organise academic and knowledge-transfer events for all stakeholders, including online expert talks, annual research conferences and training school, and an annual online international conference for people with PCD and their families, co-organised with PCD support groups worldwide.

European Respiratory Society/American Thoracic Society Taskforce for the diagnosis of PCD (2023-2025)

Myrofora Goutaki

This joint taskforce of the European Respiratory Society (ERS) and the American Thoracic Society (ATS) is developing an international clinical practice guideline for the diagnosis of children and adults with PCD.

National physician surveys of asthma diagnosis

Claudia Kuehni, Mari Sasaki, Beatriz Guerra Buezo, Tayisiya Krasnova, Mandukhai Ganbat

We aim to better understand how physicians in pediatrics, general practice, and specialty care (allergology, pulmonology) diagnose asthma in school-age children, particularly their adherence to published guidelines and utilization of objective tests. We are designing standardized questionnaires to widely survey the healthcare networks in Switzerland, Ukraine, and Mongolia, facilitated by collaborations with national physician societies. The knowledge gained through these surveys will allow a greater understanding of real-world pediatric asthma diagnosis in both high-resource and lower resource settings.

International Primary Ciliary Dyskinesia (iPCD) Cohort

Claudia Kuehni, Myrofora Goutaki

The iPCD Cohort was established under the framework of the European Union’s Seventh Framework Program (EU FP7) project BESTCILIA (Better Experimental Screening and Treatment for Primary Ciliary Dyskinesia-/2012-2016) and further developed in the BEAT-PCD COST Action (BM1407). It aimed to identify and assemble all available datasets with clinical and diagnostic data from PCD patients worldwide in order to answer questions on clinical phenotype, disease severity, prognosis, and effect of treatments in patients with this rare multiorgan disease. It is an international cohort with retrospective and prospective design, combining available data from national and local registries and clinical or diagnostic databases. The project was funded by the EU and the Swiss National Science Foundation (SNF 320030B_192804)

Surveillance of the Swiss Cystic Fibrosis (CF) newborn screening program

Claudia Kuehni, Beatriz Guerra Buezo

Newborn screening for CF was introduced in Switzerland in 2011. The performance of the national screening program is continuously evaluated in a database hosted by ISPM Bern.

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Please note that only members of staff of ISPM Bern are listed.

European Respiratory Society Taskforce for the diagnosis of asthma in children aged 5 to 16 years

Claudia Kuehni, Myrofora Goutaki, Rebeca Mozun, Carmen de Jong

This taskforce of the European Respiratory Society (ERS) developed and published a clinical practice guideline to improve the diagnosis of asthma in school-aged children.

Observational trials in primary ciliary dyskinesia (WP1, BESTCILIA)

Claudia Kuehni, Myrofora Goutaki, Elisabeth Maurer, Florian Halbeisen

This project was part of BESTCILIA, an EU FP-7 project that aimed to characterise the clinical course of PCD and to improve diagnosis and treatment. Work package 1, led by ISPM Bern, identified, collected and analysed datasets on PCD patients from national registries or observational studies. With the resulting meta-cohort it is possible to i) describe the clinical presentation, growth and lung function over the course of life, ii) evaluate diagnostic examinations and evaluate treatments in use, and iii) evaluate long-term prognosis.

We were also involved in BESTCILIA work packages WP2 (development of an international PCD registry), WP4 (development of a PCD-specific health-related quality of life instrument) and WP5, the first randomised controlled trial (RCT) in PCD patients.

European Respiratory Society Taskforce: Diagnosis of primary ciliary dyskinesia (PCD) in the molecular age: a practice guideline for diagnosing patients with PCD

Claudia Kuehni, Myrofora Goutaki

This taskforce of the European Respiratory Society (ERS) developed a clinical practice guideline to improve the diagnosis of PCD.

Defining phenotypes and risk factors of chronic non-specific cough in childhood

Claudia Kuehni, Maja Jurca, Ben Spycher, Myrofora Goutaki

This PhD project focused on the epidemiology of chronic and recurrent cough in childhood by analysing original data from the Leicester respiratory cohorts and the BILD cohort, and by summarising the current evidence in systematic reviews. The project was funded by the Swiss National Science Foundation (SNF PDFMP3_137033).

Breastfeeding and respiratory outcomes from infancy to school-age: pathways and temporal sequence

Claudia Kuehni, Jingying Wang, Myrofora Goutaki

This SNF-funded project investigated the association between breastfeeding and respiratory outcomes from infancy to school age by performing systematic reviews and analysing original data from the Leicester respiratory cohorts, the Swiss BILD cohort and international cohort studies. The project was funded by the Swiss National Science Foundation (SNF 32003B_144068).

Predicting onset and persistence of wheeze in children

Claudia Kuehni, Aniña Pescatore, Ben Spycher

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Alveolar growth and development in childhood measured by helium-3 magnetic resonance

Claudia Kuehni

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Primary Ciliary Dyskinesia in Children: a European survey

Claudia Kuehni, Marie Pierre Strippoli, Elisabeth Maurer

Please note that only members of the ISPM Bern staff (past and present) are listed.