Paediatric Cancer Epidemiology Group

Group leader: Prof. Dr. med. Claudia Kuehni

The Paediatric Cancer Epidemiology Group studies the epidemiology of childhood cancer throughout life. We conduct population-based and epidemiological studies of incidence, causes and survival of childhood cancer, and prospective clinical follow-up studies on long-term outcomes after childhood cancer in Switzerland. We work closely together with the nine pediatric oncology clinics in Switzerland and the Childhood Cancer Registry (ChCR). The ChCR is a large national, population-based registry that includes detailed information on diagnosis and treatment of more than 8,600 children who have been diagnosed with cancer in Switzerland since 1976 (https://www.childhoodcancerregistry.ch). We participate in collaborative national and international research projects, such as the pan-European network for care of survivors after childhood and adolescent cancer (PanCare) and the International Late Effects of Childhood Cancer Guideline Harmonization Group (IGHG).

Research topics include incidence and survival of childhood cancer, and the burden and spectrum of late effects that childhood cancer survivors may experience such as hearing loss, cardiac and pulmonary dysfunction, and secondary neoplasms. We also investigate psychological and social aspects, health-related quality of life, health behaviours, and health care use.

Group leader

Group members

The Swiss Childhood Cancer Survivor Study (SCCSS)

Luzius Mader, Fabiën Belle, Claudia Kuehni

The SCCSS is a nationwide, population-based self-reported questionnaire survey. We continuously include all childhood and adolescent cancer patients registered in the ChCR who are alive at least 5 years after cancer diagnosis. Based on their responses to our questionnaires, we study long-term consequences of childhood cancer in Switzerland, including somatic and psycho-social late effects, health-related quality of life, health behaviours, and health care use. The project is funded by the Swiss Cancer League and Swiss Cancer Research (KLS/KFS-4825-01-2019) and the parent association Kinderkrebshilfe Schweiz (https://www.kinderkrebshilfe.ch/).

Dietary intake, overweight, and chronic health problems after childhood cancer (SCCSS Nutrition study)

Fabiën Belle, Claudia Kuehni, Murielle Bochud (Lausanne)

The SCCSS-Nutrition study is embedded in the SCCSS. It aims to characterize diet, lifestyle, and overweight in childhood cancer survivors. The SCCSS-Nutrition study collects dietary data from food frequency questionnaires and urine samples. We collect height and weight from questionnaires and medical records. This project is funded by Swiss Cancer Research (KFS-4722-02-2019), the Swiss Cancer League (KLS-3644-02-2015), and Force Foundation.

Prospective clinical studies (SCCSS Follow-Up; pulmonary dysfunction)

Claudia Kuehni, Maria Otth, Rahel Kasteler, Christina Schindera

The framework for a national standardized assessment of late outcomes after childhood cancer in all participating paediatric oncology clinics was established in 2020 (SCCSS-Follow-Up). SCCSS-Follow-Up collects data from standardized clinical examinations during regular follow-up care encounters in the clinics. Sub-studies will focus on different late effects, with a first focus on pulmonary dysfunction after pulmotoxic treatment evaluated with lung function tests. Recruitment of study participants will start in 2021. This project is supported by Swiss Cancer Research (KFS-4157-02-2017).

Cardiovascular Late Effects after Childhood Cancer (CardioOnco Study)

Christina Schindera, Tomas Slama, Claudia Kuehni, Thomas Suter (Bern), Nicolas von der Weid (Basel)

The CardioOnco study is a prospective longitudinal multicentre study. It aims to compare conventional with speckle tracking echocardiography for the early detection of cardiac disease in childhood cancer survivors. It also aims to understand the clinical determinants for the development of cardiac disease after childhood cancer. This study is conducted as part of regular clinical care in the Cardio oncology outpatient clinics of participating centres. The study started in 2016 at the University Hospital in Bern and from 2021 onwards will be expanded to additional clinical centres across Switzerland. We hope that we will contribute to earlier detection of cardiac disease in the future and prevent more severe cardiovascular late effects in childhood cancer survivors. This project is funded by Swiss Cancer League (KFS 5027-02-2020).

Germline DNA Biobank Switzerland for Childhood Cancer and Blood Disorders BISKIDS

Nicolas Waespe, Claudia Kuehni, Marc Ansari (Geneva)

The BISKIDS project was started in 2019 and collects genetic samples from childhood cancer patients and survivors. We use easy-to-use saliva samples and buccal swabs which can be collected at home by participants/ childhood cancer patients and survivors. So far, more than 500 people have participated and the first samples are being analysed as part of international projects. The aim of the project is to have a resource for genetic research that is growing constantly.

Genetic Risks for Childhood Cancer Complications Switzerland GECCOS

Nicolas Waespe, Sven Strebel, Claudia Kuehni, Marc Ansari (Geneva)

The aim of the GECCOS project is to find genetic risk factors of complications after childhood cancer. We will use DNA samples of Swiss childhood cancer patients from the BISKIDS Biobank to study genetic differences between patients and test whether they are associated with long-term complications. This will help us to understand why some patients develop complications after childhood cancer treatment and others not. This project is a collaboration of the Childhood Cancer Research Group, ISPM, Bern and the Children’s Hospital Geneva.

The Swiss Pediatric Hematology/ Oncology Metabank – a network for precision medicine research

Claudia Kuehni, Marc Ansari (Geneva), Jean-Pierre Bourquin (Zürich), Martin Drees, Cornelia Stadter, Nicolas Waespe, Adrian Spoerri

The Metabank project links the clinical database of the Childhood Cancer Research Group with two biobanks, the Swiss Germline DNA Biobank for Childhood Cancer and Blood Disorders (BISKIDS) and the Swiss Pediatric Hematology Oncology Biobank Network (SPHO). The Metabank will facilitate in-depth research in the fields of cancer predispositions, pharmacogenetics, and genetic modifiers of long-term complications after childhood cancer. The project is funded by the Swiss National Science Foundation (SNSF grant number 31BL30_185396).

Community-based screening program for hearing loss after childhood cancer

Fabienne Luzi, Sven Strebel, Luzius Mader, Nicolas Waespe, Marc Ansari (Geneva), Martin Kompis (Bern), Nicolas von der Weid (Basel), Gisela Michel (Luzern), Claudia Kuehni,

This project aims to implement a low-threshold-access and community-based screening program for hearing loss after childhood cancer. We will follow a participatory research approach and actively involve key stakeholder in planning, conducting and evaluating this screening program. We will use questionnaires, interviews, and focus groups discussions for the evaluation of the screening program. This project is funded by the Swiss Cancer League (HSR-4951-11-2019).

PanCare Childhood and Adolescent Cancer Survivor Care and Follow-up Studies (PanCareSurFup)

Claudia Kuehni, Luzius Mader

This project investigates the burden and risk factors of the most severe and life threatening late effects: secondary neoplasms and cardiovascular disease, and premature death. We contributed the data on 4719 Swiss five-year survivors to the Pan-European cohort and provided detailed treatment data from medical records of 139 Swiss survivors.

PanCare Studies on Fertility and Ototoxicity to Improve Quality of Life after Cancer during Childhood, Adolescence and Young Adulthood (PanCareLIFE)

Claudia Kuehni, Grit Sommer

This project investigates hearing loss, fertility, and quality of life after childhood cancer. We contributed the SCCSS questionnaire data from 1585 survivors on hearing loss, fertility, and quality of life. We also identified 304 survivors at risk for hearing loss and collected their hearing tests. Among these, 153 survivors provided their saliva sample for the analysis of genetic risk factors for hearing loss.

Completed projects

  • Risk of cancer and long-term mortality in children treated with growth hormone: Swiss participation in the EU FP7 project (SAGhE)
    Claudia Kuehni, Grit Sommer
  • Dietary habits, nutrition, and risk of late effects after childhood cancer
    Claudia Kuehni, Fabiën Belle
  • Lung problems after childhood cancer: Implementation of a structured follow-up care in Switzerland
    Pulmonary late-effects in long-term childhood cancer survivors – Development of guidelines for follow-up care
    Claudia Kuehni, Grit Sommer, Rahel Kasteler, Myrofora Goutaki
  • Mortality after cancer in children and adolescences
    Claudia Kuehni, Matthias Schindler
    This study focuses on survival of cancer in childhood and adolescence. We determine time trends and factors associated with childhood and adolescent cancer survival and we investigate cause specific long-term mortality in 5-year survivors of childhood cancer.
  • PanCare Childhood and Adolescent Cancer Survivor Care and Follow-up Study (PanCareSurFup)
    Claudia Kuehni, Rahel Kuonen, Matthias Schindler, Erika Brantschen-Berclaz
    This European study investigates the impact of treatment regimes on the long-term health of childhood cancer survivors. It focuses on the following, severe somatic late effects: cardiovascular diseases, second malignant neoplasm and late mortality. Furthermore it will develop guidelines for long-term follow-up of childhood cancer survivors.
    More information
  • Childhood cancer and background ionizing radiation
    Ben Spycher, Claudia Kuehni, Matthias Egger, Marcel Zwahlen
  • Childhood cancer and vicinity of residence to petrol stations and major roads: a census-based nationwide cohort study
    Ben Spycher, Matthias Egger, Claudia Kuehni, Adrian Spörri, Marcel Zwahlen
  • Childhood Cancer and Nuclear Power Plants in Switzerland (CANUPIS)
    Claudia Kuehni, Matthias Egger
    More information 
  • Childhood leukaemia and lymphoma: are incidence and survival in Switzerland associated with socioeconomic status?
    Martin Adam, Claudia Kuehni, Marcel Zwahlen
  • Completeness of cancer registration and diagnostic accuracy in the Swiss Childhood Cancer Registry: validation against independent sources of data
    Martin Adam, Claudia Kuehni, Marcel Zwahlen

 

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