Swiss Childhood Cancer Survivor Study

NCT ID: NCT03297034

Last Updated: 2025-06-03

Basic Information

• Recruitment Status: RECRUITING
• Total Enrollment: 4076 participants
• Study Classification: OBSERVATIONAL
• Study Start Date: 2007-01-01
• Study Completion Date: 2050-01-31

Brief Summary

The SCCSS is designed to investigate which long-term effects childhood cancer and its treatment have on survivors, and includes those who were under 20 years when they were diagnosed. The SCCSS explores childhood cancer survivors' quality of life, the health care received by childhood cancer survivors during follow-up care, the effects of medication, somatic and psychosocial health issues, how childhood cancer survivors take care of their own health including health behaviors, and also collects demographic details like family background, education and profession. To learn more about these topics, the investigators send questionnaires to childhood or adolescent cancer survivors. The investigators use the results to inform physicians and patients, and to improve treatment of childhood cancer and follow-up.

Detailed Description

The SCCSS is designed to investigate which long-term effects childhood cancer and its treatment have on survivors, and includes those who were under 20 years when they were diagnosed. The SCCSS explores childhood cancer survivors' quality of life, the health care received by childhood cancer survivors during follow-up care, the effects of medication, somatic and psychosocial health issues, how childhood cancer survivors take care of their own health including health behaviors, and also collects demographic details like family background, education and profession. To learn more about these topics, the investigators send questionnaires to childhood or adolescent cancer survivors. The investigators use the results to inform physicians and patients, and to improve treatment of childhood cancer and follow-up.

Background: Therapies have improved so much in the past decades that more than 80% of children and adolescents now survive cancer. This means that the population of long-term childhood cancer survivors is growing. Since cancer and its treatments may later have adverse effects, it is important to track and improve survivor health and quality of life. Comprehensive data on the burden of late effects of childhood cancer or risk factors for late effects was not available, and so Switzerland set up the SCCSS to increase knowledge and improve the quality of care and follow-up.

Objectives: The SCCSS investigates long-term outcomes of survivors of childhood and adolescent cancer, and the incidence and spectrum of various somatic and psychosocial outcomes including late mortality, second primary malignancies, somatic health and medication, mental health, educational achievements, health-related quality of life, and the association of these outcomes with risk factors like tumor, treatment modalities, and demographic characteristics. The SCCSS also investigates how health-care is provided, and how long-term childhood cancer survivors take care of their health inducing health behaviors.

Methods: All Swiss residents who were diagnosed with cancer at age <20 years, have survived at least 5 years since cancer diagnosis, received a detailed questionnaire. The investigators added data from general practitioners and hospital records. To compare survivors with the general population, they also send the questionnaire to the siblings of childhood cancer survivors. Since 2025 we ask participants of the SCCSS if they are interested in wearing an accelerometer for one week to track the amount of time they spend moving, sitting and sleeping (SCCSS-Activity).

Rationale and significance: The data collected by the SCCSS allows the investigators to study long-term outcomes of Swiss childhood cancer survivors. The SCCSS helps to learn more about the incidence of late effects and their risk factors. It also allows to summarize the current state of care in Switzerland. Since early diagnosis can prevent or mitigate many late effects, tracking them will help to improve the health of current and future childhood cancer survivors.

Current status of the SCCSS: From 2008-2025, the investigators have contacted 6487 childhood cancer survivors diagnosed between 1976-2019 and 2074 of their siblings. The investigators contact new 5-year childhood cancer survivors at regular intervals, and continuously analyse and publish data and findings. By 2022, the investigators have contacted 3443 childhood cancer survivors for a follow-up questionnaire and will continue with this at regular intervals.

Current status of the SCCSS-Activity: From 2025, the investigators have asked 319 participants of the SCCSS if they are interested in participating in the SCCSS-Activity.

Funding: Swiss Cancer League/ Swiss Cancer Research (Grant No: KLS/KFS-4825-01-2019), Stiftung für krebskranke Kinder (Regio basiliensis) and Kinderkrebshilfe Schweiz.

Conditions

Childhood Cancer

Study Design

• Observational Model Type: COHORT
• Study Time Perspective: PROSPECTIVE

Eligibility Criteria

Inclusion Criteria

• Who were diagnosed with cancer at age <20 years
• Who have survived at least 5 years after cancer diagnosis
• Who were Swiss residents when they were diagnosed, and
• Who gave informed consent

• Minimum Eligible Age: 5 Years
• Eligible Sex: ALL
• Accepts Healthy Volunteers: Yes

Sponsors

Swiss Pediatric Oncology Group

OTHER

Sponsor Role: collaborator

University of Bern

OTHER

Sponsor Role: lead

Responsible Party

Responsibility Role: SPONSOR

Principal Investigators

Claudia E Kuehni, Prof.

Role: STUDY_DIRECTOR

Institute of Social and Preventive Medicine (ISPM), Univeristy of Bern

Locations

Institute of Social and Preventive Medicine (ISPM), University of Bern

Bern, , Switzerland

Site Status: RECRUITING

Countries

Switzerland

Central Contacts

Claudia E Kuehni, Prof.

Role: CONTACT

claudia.kuehni@unibe.ch

+41 (0)31 631 35 07

Facility Contacts

Claudia E Kuehni, Prof.

Role: primary

claudia.kuehni@unibe.ch

+41 (0)31 631 35 07

References

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Jankovic M, Haupt R, Spinetta JJ, Beck JD, Byrne J, Calaminus G, Lackner H, Biondi A, Oeffinger K, Hudson M, Skinner R, Reaman G, van der Pal H, Kremer L, den Hartogh J, Michel G, Frey E, Bardi E, Hawkins M, Rizvi K, Terenziani M, Valsecchi MG, Bode G, Jenney M, de Vathaire F, Garwicz S, Levitt GA, Grabow D, Kuehni CE, Schrappe M, Hjorth L; participants in PanCare. Long-term survivors of childhood cancer: cure and care-the Erice Statement (2006) revised after 10 years (2016). J Cancer Surviv. 2018 Oct;12(5):647-650. doi: 10.1007/s11764-018-0701-0. Epub 2018 Jun 26.

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Bright CJ, Hawkins MM, Winter DL, Alessi D, Allodji RS, Bagnasco F, Bardi E, Bautz A, Byrne J, Feijen EAM, Fidler MM, Garwicz S, Grabow D, Gudmundsdottir T, Guha J, Haddy N, Jankovic M, Kaatsch P, Kaiser M, Kuehni CE, Linge H, Ofstaas H, Ronckers CM, Skinner R, Teepen JC, Terenziani M, Vu-Bezin G, Wesenberg F, Wiebe T, Sacerdote C, Jakab Z, Haupt R, Lahteenmaki P, Zaletel LZ, Kuonen R, Winther JF, de Vathaire F, Kremer LC, Hjorth L, Reulen RC; PanCareSurFup Consortium. Risk of Soft-Tissue Sarcoma Among 69 460 Five-Year Survivors of Childhood Cancer in Europe. J Natl Cancer Inst. 2018 Jun 1;110(6):649-660. doi: 10.1093/jnci/djx235.

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Kasteler R, Kam LMH, Weiss A, Waespe N, Sommer G, Singer F, von der Weid NX, Ansari M, Kuehni CE; Swiss Pediatric Oncology Group (SPOG). Monitoring pulmonary health in Swiss childhood cancer survivors. Pediatr Blood Cancer. 2018 Oct;65(10):e27255. doi: 10.1002/pbc.27255. Epub 2018 Jun 15.

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Tonorezos ES, Barnea D, Cohn RJ, Cypriano MS, Fresneau BC, Haupt R, Hjorth L, Ishida Y, Kruseova J, Kuehni CE, Kurkure PA, Langer T, Nathan PC, Skeen JE, Skinner R, Tacyildiz N, van den Heuvel-Eibrink MM, Winther JF, Hudson MM, Oeffinger KC. Models of Care for Survivors of Childhood Cancer From Across the Globe: Advancing Survivorship Care in the Next Decade. J Clin Oncol. 2018 Jul 20;36(21):2223-2230. doi: 10.1200/JCO.2017.76.5180. Epub 2018 Jun 6.

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Allodji RS, Hawkins MM, Bright CJ, Fidler-Benaoudia MM, Winter DL, Alessi D, Fresneau B, Journy N, Morsellino V, Bardi E, Bautz A, Byrne J, Feijen ELA, Teepen JC, Vu-Bezin G, Rubino C, Garwicz S, Grabow D, Gudmundsdottir T, Guha J, Hau EM, Jankovic M, Kaatsch P, Kaiser M, Linge H, Muraca M, Llanas D, Veres C, Ofstaas H, Diallo I, Mansouri I, Ronckers CM, Skinner R, Terenziani M, Wesenberg F, Wiebe T, Sacerdote C, Jakab Z, Haupt R, Lahteenmaki P, Zaletel LZ, Kuehni CE, Winther JF, Michel G, Kremer LCM, Hjorth L, Haddy N, de Vathaire F, Reulen RC. Risk of subsequent primary leukaemias among 69,460 five-year survivors of childhood cancer diagnosed from 1940 to 2008 in Europe: A cohort study within PanCareSurFup. Eur J Cancer. 2019 Aug;117:71-83. doi: 10.1016/j.ejca.2019.05.013. Epub 2019 Jun 28.

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Weiss A, Sommer G, Schindera C, Wengenroth L, Karow A, Diezi M, Michel G, Kuehni CE; Swiss Paediatric Oncology Group (SPOG). Hearing loss and quality of life in survivors of paediatric CNS tumours and other cancers. Qual Life Res. 2019 Feb;28(2):515-521. doi: 10.1007/s11136-018-2021-2. Epub 2018 Oct 10.

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Essig S, Michel G, Dupont C, Kiss A, Bergstraesser E, Tinner EM, Kuehni CE; Swiss Pediatric Oncology Group (SPOG). Communicating "cure" to pediatric oncology patients: A mixed-methods study. Pediatr Blood Cancer. 2019 Jun;66(6):e27661. doi: 10.1002/pbc.27661. Epub 2019 Feb 7.

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Hau EM, Caccia JN, Kasteler R, Spycher B, Suter T, Ammann RA, von der Weid NX, Kuehni CE. Cardiovascular disease after childhood acute lymphoblastic leukaemia: a cohort study. Swiss Med Wkly. 2019 Mar 10;149:w20012. doi: 10.4414/smw.2019.20012. eCollection 2019 Feb 25.

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Belle FN, Beck Popovic M, Ansari M, Otth M, Kuehni CE, Bochud M. Nutritional Assessment of Childhood Cancer Survivors (the Swiss Childhood Cancer Survivor Study-Nutrition): Protocol for a Multicenter Observational Study. JMIR Res Protoc. 2019 Nov 18;8(11):e14427. doi: 10.2196/14427.

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Belle FN, Schindera C, Guessous I, Popovic MB, Ansari M, Kuehni CE, Bochud M. Sodium and Potassium Intakes and Cardiovascular Risk Profiles in Childhood Cancer Survivors: The SCCSS-Nutrition Study. Nutrients. 2019 Dec 24;12(1):57. doi: 10.3390/nu12010057.

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Schindera C, Weiss A, Hagenbuch N, Otth M, Diesch T, von der Weid N, Kuehni CE; Swiss Pediatric Oncology Group (SPOG). Physical activity and screen time in children who survived cancer: A report from the Swiss Childhood Cancer Survivor Study. Pediatr Blood Cancer. 2020 Feb;67(2):e28046. doi: 10.1002/pbc.28046. Epub 2019 Nov 20.

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Langer T, Clemens E, Broer L, Maier L, Uitterlinden AG, de Vries ACH, van Grotel M, Pluijm SFM, Binder H, Mayer B, von dem Knesebeck A, Byrne J, van Dulmen-den Broeder E, Crocco M, Grabow D, Kaatsch P, Kaiser M, Spix C, Kenborg L, Winther JF, Rechnitzer C, Hasle H, Kepak T, van der Kooi AF, Kremer LC, Kruseova J, Bielack S, Sorg B, Hecker-Nolting S, Kuehni CE, Ansari M, Kompis M, van der Pal HJ, Parfitt R, Deuster D, Matulat P, Tillmanns A, Tissing WJE, Beck JD, Elsner S, Am Zehnhoff-Dinnesen A, van den Heuvel-Eibrink MM, Zolk O; PanCareLIFE consortium. Association of candidate pharmacogenetic markers with platinum-induced ototoxicity: PanCareLIFE dataset. Data Brief. 2020 Aug 24;32:106227. doi: 10.1016/j.dib.2020.106227. eCollection 2020 Oct.

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Waespe N, Belle FN, Redmond S, Schindera C, Spycher BD, Rossler J, Ansari M, Kuehni CE; Swiss Paediatric Oncology Group (SPOG). Cancer predisposition syndromes as a risk factor for early second primary neoplasms after childhood cancer - A national cohort study. Eur J Cancer. 2021 Mar;145:71-80. doi: 10.1016/j.ejca.2020.11.042. Epub 2021 Jan 7.

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Waespe N, Strebel S, Marino D, Mattiello V, Muet F, Nava T, Schindera C, Belle FN, Mader L, Spoerri A, Kuehni CE, Ansari M. Predictors for participation in DNA self-sampling of childhood cancer survivors in Switzerland. BMC Med Res Methodol. 2021 Oct 30;21(1):236. doi: 10.1186/s12874-021-01428-1.

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Belle FN, Chatelan A, Kasteler R, Mader L, Guessous I, Beck-Popovic M, Ansari M, Kuehni CE, Bochud M. Dietary Intake and Diet Quality of Adult Survivors of Childhood Cancer and the General Population: Results from the SCCSS-Nutrition Study. Nutrients. 2021 May 22;13(6):1767. doi: 10.3390/nu13061767.

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Dudley IM, Sunguc C, Heymer EJ, Winter DL, Teepen JC, Belle FN, Bardi E, Bagnasco F, Gudmundsdottir T, Skinner R, Michel G, Byrne J, Ofstaas H, Jankovic M, Mazic MC, Mader L, Loonen J, Garwicz S, Wiebe T, Alessi D, Allodji RS, Haddy N, Grabow D, Kaatsch P, Kaiser M, Maule MM, Jakab Z, Gunnes MW, Terenziani M, Zaletel LZ, Kuehni CE, Haupt R, de Vathaire F, Kremer LC, Lahteenmaki PM, Winther JF, Hjorth L, Hawkins MM, Reulen RC. Risk of subsequent primary lymphoma in a cohort of 69,460 five-year survivors of childhood and adolescent cancer in Europe: The PanCareSurFup study. Cancer. 2023 Feb 1;129(3):426-440. doi: 10.1002/cncr.34561. Epub 2022 Nov 29.

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Sunguc C, Hawkins MM, Winter DL, Dudley IM, Heymer EJ, Teepen JC, Allodji RS, Belle FN, Bagnasco F, Byrne J, Bardi E, Ronckers CM, Haddy N, Gudmundsdottir T, Garwicz S, Jankovic M, van der Pal HJH, Mazic MC, Schindera C, Grabow D, Maule MM, Kaatsch P, Kaiser M, Fresneau B, Michel G, Skinner R, Wiebe T, Sacerdote C, Jakab Z, Gunnes MW, Terenziani M, Winther JF, Lahteenmaki PM, Zaletel LZ, Kuehni CE, Kremer LC, Haupt R, de Vathaire F, Hjorth L, Reulen RC. Risk of subsequent primary oral cancer in a cohort of 69,460 5-year survivors of childhood and adolescent cancer in Europe: the PanCareSurFup study. Br J Cancer. 2023 Jan;128(1):80-90. doi: 10.1038/s41416-022-02016-w. Epub 2022 Nov 1.

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Otth M, Yammine S, Usemann J, Latzin P, Mader L, Spycher B, Gungor T, Scheinemann K, Kuehni CE; Swiss Pediatric Oncology Group (SPOG). Longitudinal lung function in childhood cancer survivors after hematopoietic stem cell transplantation. Bone Marrow Transplant. 2022 Feb;57(2):207-214. doi: 10.1038/s41409-021-01509-1. Epub 2021 Nov 8.

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Strebel S, Mader L, Slama T, Waespe N, Weiss A, Parfitt R, Am Zehnhoff-Dinnesen A, Kompis M, von der Weid NX, Ansari M, Kuehni CE. Severity of hearing loss after platinum chemotherapy in childhood cancer survivors. Pediatr Blood Cancer. 2022 Sep;69(9):e29755. doi: 10.1002/pbc.29755. Epub 2022 Jun 19.

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Mader L, Slama T, Schindera C, Rossler J, von der Weid NX, Belle FN, Kuehni CE. Social, emotional, and behavioral functioning in young childhood cancer survivors with chronic health conditions. Pediatr Blood Cancer. 2022 Sep;69(9):e29756. doi: 10.1002/pbc.29756. Epub 2022 May 13.

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Belle FN, Schindera C, Ansari M, Armstrong GT, Beck-Popovic M, Howell R, Leisenring WM, Meacham LR, Rossler J, Spycher BD, Tonorezos E, von der Weid NX, Yasui Y, Oeffinger KC, Kuehni CE. Risk factors for overweight and obesity after childhood acute lymphoblastic leukemia in North America and Switzerland: A comparison of two cohort studies. Cancer Med. 2023 Oct;12(20):20423-20436. doi: 10.1002/cam4.6588. Epub 2023 Oct 9.

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Wang Y, Ronckers CM, van Leeuwen FE, Moskowitz CS, Leisenring W, Armstrong GT, de Vathaire F, Hudson MM, Kuehni CE, Arnold MA, Demoor-Goldschmidt C, Green DM, Henderson TO, Howell RM, Ehrhardt MJ, Neglia JP, Oeffinger KC, van der Pal HJH, Robison LL, Schaapveld M, Turcotte LM, Waespe N, Kremer LCM, Teepen JC; International Consortium for Pooled Studies on Subsequent Malignancies after Childhood and Adolescent Cancer. Subsequent female breast cancer risk associated with anthracycline chemotherapy for childhood cancer. Nat Med. 2023 Sep;29(9):2268-2277. doi: 10.1038/s41591-023-02514-1. Epub 2023 Sep 11.

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Baenziger J, Roser K, Mader L, Ilic A, Sansom-Daly UM, von Bueren AO, Tinner EM, Michel G. Post-traumatic growth in parents of long-term childhood cancer survivors compared to the general population: A report from the Swiss childhood cancer survivor study-Parents. Psychooncology. 2024 Jan;33(1):e6246. doi: 10.1002/pon.6246. Epub 2023 Dec 4.

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Christen S, Roser K, Mader L, Otth M, Scheinemann K, Sommer G, Kuehni C, Michel G. Incidence and prevalence of musculoskeletal health conditions in survivors of childhood and adolescent cancers: A report from the Swiss childhood cancer survivor study. Cancer Med. 2024 Apr;13(8):e7204. doi: 10.1002/cam4.7204.

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Hau EM, Slama T, Essig S, Michel G, Wengenroth L, Bergstraesser E, von der Weid NX, Schindera C, Kuehni CE. Validation of self-reported cardiovascular problems in childhood cancer survivors by contacting general practitioners: feasibility and results. BMC Prim Care. 2024 Mar 8;25(1):81. doi: 10.1186/s12875-024-02322-7.

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Raguindin PF, Rueegg CS, Kalin S, Bergstraesser E, von der Weid NX, Tinner EM, Kuehni CE, Michel G. Longitudinal changes of psychological distress among childhood cancer survivors: The Swiss Childhood Cancer Survivor Study. Pediatr Blood Cancer. 2024 Aug;71(8):e31095. doi: 10.1002/pbc.31095. Epub 2024 Jun 2.

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Slama T, Mader L, Zarkovic M, Malar R, Schifferli A, von der Weid NX, Kuehni CE, Schindera C. Chronic health conditions after childhood Langerhans cell histiocytosis: Results from the Swiss Childhood Cancer Survivor Study. J Cancer Surviv. 2025 Aug;19(4):1212-1221. doi: 10.1007/s11764-024-01544-z. Epub 2024 Feb 14.

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Zarkovic M, Sommer G, Nigg C, Slama T, Schneider C, Ansari M, von der Weid N, Schindera C, Kuehni CE. Parental smoking and respiratory outcomes in young childhood cancer survivors. Pediatr Blood Cancer. 2024 Nov;71(11):e31310. doi: 10.1002/pbc.31310. Epub 2024 Sep 3.

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Nigg C, Matti C, Jorger P, von Bueren AO, Filippi C, Diesch-Furlanetto T, Tomasikova Z, Kuehni CE, Sommer G. Dental Health of Childhood Cancer Survivors-A Report From the Swiss Childhood Cancer Survivor Study (SCCSS). Pediatr Blood Cancer. 2025 May;72(5):e31629. doi: 10.1002/pbc.31629. Epub 2025 Mar 6.

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Related Links

https://childhoodcancerregistry.ch

Swiss Childhood Cancer Registry

https://www.swiss-ccss.ch

Swiss Childhood Cancer Survivor Study, SCCSS

Other Identifiers

SCCSS

Identifier Type: -

Identifier Source: org_study_id