An observational study in Late Effect and Childhood Cancer, sponsored by University of Bern. Recruiting at 3 sites in Switzerland. Per ClinicalTrials.gov, last updated 2025-09-23.
Sponsored by University of Bern · Observational
The SCCSS-FollowUp is a national, multicenter cohort study designed to investigate late effects in childhood cancer survivors in a prospective and longitudinal way. The study is embedded in regular follow-up care and inclusion in the study takes place in a step-wise approach. The investigators collect data from clinical examinations, laboratory and functional tests, and questionnaires to learn more about late effects of childhood cancer treatments.
Background: Survival after childhood cancer has increased substantially over the last decades. In Switzerland, 10-year survival now exceeds 85%. This results in increasing numbers of childhood cancer survivors - estimated 6,600 survivors currently in Switzerland. Due to the cancer treatment or the cancer itself, a large part of the childhood cancer survivors suffer from late effects. As survivors of childhood cancer have decades of life ahead, it is of special interest to minimize potentially avoidable chronic diseases, impaired quality of life, deaths, and health care costs. There is a need to assess clinical data prospectively in a standardized way across clinics to study late effects on a national level. Such data are currently not available in Switzerland and the SCCSS-FollowUp aims to fill this gap.
Objectives: The SCCSS-FollowUp assesses the prevalence of late effects through risk-adapted medical examinations (in accordance with international guidelines and evidence), identifies CCS with asymptomatic late effects through functional testing, e.g. echocardiography or lung function testing, standardizes clinical follow-up examinations in CCS in Switzerland, and collects follow-up data in a longitudinal way. The SCCSS-FollowUp also investigates sociodemographic, treatment, lifestyle, and clinical risk factors for late effect development.
Methods: The SCCSS-FollowUp recruits eligible childhood cancer survivors in a stepwise approach by identifying CCS at risk because of specific treatment modalities (e.g. exposure to anthracyclines or thoracic irradiation). The investigators ask eligible survivors for participation. Those who consent receive before or during the next follow-up visits focused questionnaires. The questionnaires are short and focus on one organ system, but participants can receive different questionnaires at subsequent visits. The data generated during the follow-up visits, such as clinical examination, functional and laboratory test results, and the completed questionnaires are entered in the SCCSS-FollowUp database. The examinations and tests are performed in a standardized way in all participating clinics and according to follow-up guidelines or other evidence-based literature.
Rationale and significance:
The data collected within the SCCSS-FollowUp allow research on late effects on a national level and based on objective clinical data obtained during routine care. The SCCSS-FollowUp helps to learn more about late effects, especially subclinical damage, which are not detectable by questionnaire only. Early detection of these late effects and timely treatment can prevent and mitigate further deterioration. Furthermore, the SCCSS-FollowUp helps to assess risk factors for late effects development which can be used to amend cancer treatment in future patients. The SCCSS-FollowUp thus helps to improve the health of current and future childhood cancer survivors.
9,359 studies on the registry are indexed under Neoplasms; 2,486 are open to participants now.
This study's planned enrollment of 3,000 is above the median of 205 across 1,680 observational studies indexed under Neoplasms.
Browse Neoplasms studies →University of Bern is the lead sponsor of 207 studies on the registry; 47 are open to participants now.
Counted across the registry records on this site, refreshed daily.
Childhood cancer survivors, who were diagnosed in a Swiss pediatric oncology clinic at age \<21 years from 1976 onward and who completed their cancer treatment. Survivors are eligible to participate to the study from the first day after treatment completion, but can also enter the study later.
This prospective cohort study is based on the Childhood Cancer Registry (ChCR), a national, population-based cancer registry that includes all children and adolescents in Switzerland who were diagnosed with cancer at age 0-20 years. It includes patients diagnosed with leukemia, lymphoma, central nervous system tumors, and malignant solid tumors or Langerhans cell histiocytosis.
Inclusion Criteria:
Exclusion criteria:
Physical examination, diagnostic tests depending on examined organ system (e.g. lung function test, echocardiography, audiometry), and laboratory tests (e.g. kidney parameter, hormonal levels).
Personal history and focused questionnaires per organ system including symptoms, medication use, physical activity, and general wellbeing.
Symptoms of organ-specific late effects (example of pulmonary late effects)
Number of people with cough or shortness of breath when at risk for pulmonary late effects
Time frame: At baseline
Signs of organ-specific late effects (example of pulmonary late effects)
Number of people with signs of disturbed breathing or abnormal breathing sounds when at risk for pulmonary late effects
Time frame: At baseline
Tests to assess organ-specific late effects (example of pulmonary late effects)
Number of people with abnormal pulmonary function testing (e.g. spirometry, body plethysmography) when at risk for pulmonary late effects
Time frame: At baseline
Symptoms of organ-specific late effects (example of pulmonary late effects)
Number of people with cough or shortness of breath when at risk for pulmonary late effects
Time frame: 1 year after recruitment, 2 years after recruitment, 3 years after recruitment, 4 years after recruitment, 5 years after recruitment, 10 years after recruitment, 15 years after recruitment, 20 years after recruitment
Signs of organ-specific late effects (example of pulmonary late effects)
Number of people with signs of disturbed breathing or abnormal breathing sounds when at risk for pulmonary late effects
Time frame: 1 year after recruitment, 2 years after recruitment, 3 years after recruitment, 4 years after recruitment, 5 years after recruitment, 10 years after recruitment, 15 years after recruitment, 20 years after recruitment
Tests to assess organ-specific late effects (example of pulmonary late effects)
Number of people with abnormal pulmonary function testing (e.g. spirometry, body plethysmography) when at risk for pulmonary late effects
Time frame: 1 year after recruitment, 2 years after recruitment, 3 years after recruitment, 4 years after recruitment, 5 years after recruitment, 10 years after recruitment, 15 years after recruitment, 20 years after recruitment
Treatment-related risk factors for late effects
Cumulative dose of chemotherapeutic agents or radiotherapy, exposure to surgery and hematopoietic stem cell transplantation for each participant (not exhaustive)
Time frame: At baseline
Sociodemographic and socioeconomic characteristics potentially associated with late effects
Collection of information on age at diagnosis, time since diagnosis, and gender for each participant (not exhaustive)
Time frame: At baseline, 1 year after recruitment, 2 years after recruitment, 3 years after recruitment, 4 years after recruitment, 5 years after recruitment, 10 years after recruitment, 15 years after recruitment, 20 years after recruitment
Lifestyle factors potentially associated with late effects
Collection of information on smoking status, physical activity, and body mass index for each participant (not exhaustive)
Time frame: At baseline, 1 year after recruitment, 2 years after recruitment, 3 years after recruitment, 4 years after recruitment, 5 years after recruitment, 10 years after recruitment, 15 years after recruitment, 20 years after recruitment
Comorbidities potentially associated with late effects
Collection of information on arterial hypertension or obesity for each participant (not exhaustive)
Time frame: At baseline, 1 year after recruitment, 2 years after recruitment, 3 years after recruitment, 4 years after recruitment, 5 years after recruitment, 10 years after recruitment, 15 years after recruitment, 20 years after recruitment
Plan to share: No
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