The Swiss Childhood Cancer Survivor Study - Follow-up (SCCSS-FollowUp)

NCT04732273 | Recruiting

• 1 other identifier: 2019-00739
• Study Type: observational
• Target: 3,000
• Locations: 1 country
• Sites: 3

Brief Summary

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.

Conditions

Late Effect; Childhood Cancer

Keywords

Childhood Cancer; Late Effects; Survivor

Outcome Measures

Primary Outcomes (3)

• 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

  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

  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

  At baseline

Secondary Outcomes (7)

• Symptoms of organ-specific late effects (example of pulmonary late effects)

  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)

  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)

  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

  At baseline

• Sociodemographic and socioeconomic characteristics potentially associated with late effects

  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

Interventions

Physical examination, diagnostic tests, laboratory tests OTHER

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, questionnaire OTHER

Personal history and focused questionnaires per organ system including symptoms, medication use, physical activity, and general wellbeing.

Eligibility Criteria

• Sex: all
• Healthy Volunteers: No
• Age Groups: Child (0-17), Adult (18-64), Older Adult (65+)
• Sampling Method: Non-Probability Sample

Study Population

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.

You may qualify if:

• Registered in the Childhood Cancer Registry (ChCR) or treated and followed-up in a Swiss pediatric oncology (SPOG) clinic, but not registered in the ChCR because of residency in neighboring countries
• Diagnosed at age 0 - 20 years
• Childhood cancer treatment completed
• Written informed consent

You may not qualify if:

• Childhood cancer survivors in a palliative or relapsed situation where no follow-up examinations are foreseen.

Sponsors & Collaborators

• University of Bern: lead

Study Sites (3)

University Childen's Hospital Basel

Basel, Switzerland

RECRUITING

University Children's Hospital Bern

Bern, Switzerland

RECRUITING

University Hospital Geneva

Geneva, Switzerland

RECRUITING

Related Publications (1)

• Zarkovic M, Schindera C, Sommer G, Schneider C, Usemann J, Otth M, Luer S, Ansari M, Latzin P, Kuehni CE. Assessing Pulmonary Function in Children and Adolescents After Cancer Treatment: Protocol for a Multicenter Cohort Study (Swiss Childhood Cancer Survivor Study FollowUp-Pulmo). JMIR Res Protoc. 2025 Apr 8;14:e69743. doi: 10.2196/69743.

  PMID: 40198919 DERIVED

MeSH Terms

Conditions

Neoplasms

Interventions

Restraint, Physical; Health Records, Personal; Surveys and Questionnaires

Intervention Hierarchy (Ancestors)

Behavior Control; Therapeutics; Immobilization; Investigative Techniques; Medical Records; Records; Data Collection; Epidemiologic Methods; Health Care Evaluation Mechanisms; Quality of Health Care; Health Care Quality, Access, and Evaluation; Public Health; Environment and Public Health

Study Officials

• Claudia E Kuehni, MD

  Institute of Social and Preventive Medicine, University of Bern

  PRINCIPAL INVESTIGATOR

Central Study Contacts

Claudia E Kuehni, MD

CONTACT

+41 31 631 35 07; claudia.kuehni@unibe.ch

Maša Žarković, MD

CONTACT

+41 31 684 68 58; masa.zarkovic@unibe.ch

Study Design

• Study Type: observational
• Observational Model: COHORT
• Time Perspective: PROSPECTIVE
• Sponsor Type: OTHER
• Responsible Party: SPONSOR

Study Record Dates

• First Submitted: January 26, 2021
• First Posted: February 1, 2021
• Study Start: June 20, 2022
• Primary Completion (Estimated): January 1, 2071
• Study Completion (Estimated): January 1, 2071
• Last Updated: September 23, 2025

Record last verified: 2025-09

Data Sharing

• IPD Sharing: Will not share

Locations

CH (3)