<clinical_study>
  <!-- This xml conforms to an XML Schema at:
    https://clinicaltrials.gov/ct2/html/images/info/public.xsd -->
  <required_header>
    <download_date>ClinicalTrials.gov processed this data on September 20, 2023</download_date>
    <link_text>Link to the current ClinicalTrials.gov record.</link_text>
    <url>https://clinicaltrials.gov/ct2/show/NCT03297034</url>
  </required_header>
  <id_info>
    <org_study_id>SCCSS</org_study_id>
    <nct_id>NCT03297034</nct_id>
  </id_info>
  <brief_title>Swiss Childhood Cancer Survivor Study</brief_title>
  <acronym>SCCSS</acronym>
  <official_title>Swiss Childhood Cancer Survivor Study (SCCSS)</official_title>
  <sponsors>
    <lead_sponsor>
      <agency>University of Bern</agency>
      <agency_class>Other</agency_class>
    </lead_sponsor>
    <collaborator>
      <agency>Swiss Pediatric Oncology Group</agency>
      <agency_class>Other</agency_class>
    </collaborator>
  </sponsors>
  <source>University of Bern</source>
  <oversight_info>
    <has_dmc>No</has_dmc>
    <is_fda_regulated_drug>No</is_fda_regulated_drug>
    <is_fda_regulated_device>No</is_fda_regulated_device>
  </oversight_info>
  <brief_summary>
    <textblock>
      The SCCSS is designed to investigate which long-term effects childhood cancer and its&#xD;
      treatment have on survivors, and includes those who were under 20 years when they were&#xD;
      diagnosed. The SCCSS explores childhood cancer survivors' quality of life, the health care&#xD;
      received by childhood cancer survivors during follow-up care, the effects of medication,&#xD;
      somatic and psychosocial health issues, how childhood cancer survivors take care of their own&#xD;
      health, and also collects demographic details like family background, education and&#xD;
      profession. To learn more about these topics, the investigators send questionnaires to&#xD;
      childhood or adolescent cancer survivors. The investigators use the results to inform&#xD;
      physicians and patients, and to improve treatment of childhood cancer and follow-up.&#xD;
    </textblock>
  </brief_summary>
  <detailed_description>
    <textblock>
      Background: Therapies have improved so much in the past decades that more than 80% of&#xD;
      children and adolescents now survive cancer. This means that the population of long-term&#xD;
      childhood cancer survivors is growing. Since cancer and its treatments may later have adverse&#xD;
      effects, it is important to track and improve survivor health and quality of life.&#xD;
      Comprehensive data on the burden of late effects of childhood cancer or risk factors for late&#xD;
      effects was not available, and so Switzerland set up the SCCSS to increase knowledge and&#xD;
      improve the quality of care and follow-up.&#xD;
&#xD;
      Objectives: The SCCSS investigates long-term outcomes of survivors of childhood and&#xD;
      adolescent cancer, and the incidence and spectrum of various somatic and psychosocial&#xD;
      outcomes including late mortality, second primary malignancies, somatic health and&#xD;
      medication, mental health, educational achievements, health-related quality of life, and the&#xD;
      association of these outcomes with risk factors like tumor, treatment modalities, and&#xD;
      demographic characteristics. The SCCSS also investigates how health-care is provided, and how&#xD;
      long-term childhood cancer survivors take care of their health.&#xD;
&#xD;
      Methods: All Swiss residents who were diagnosed with cancer at age &lt;20 years, have survived&#xD;
      at least 5 years since cancer diagnosis, received a detailed questionnaire. The investigators&#xD;
      added data from general practitioners and hospital records. To compare survivors with the&#xD;
      general population, they also send the questionnaire to the siblings of childhood cancer&#xD;
      survivors.&#xD;
&#xD;
      Rationale and significance: The data collected by the SCCSS allows the investigators to study&#xD;
      long-term outcomes of Swiss childhood cancer survivors. The SCCSS helps to learn more about&#xD;
      the incidence of late effects and their risk factors. It also allows to summarize the current&#xD;
      state of care in Switzerland. Since early diagnosis can prevent or mitigate many late&#xD;
      effects, tracking them will help to improve the health of current and future childhood cancer&#xD;
      survivors.&#xD;
&#xD;
      Current status of the project: From 2008-2021, the investigators have contacted 5949&#xD;
      childhood cancer survivors diagnosed between 1976-2015 and 1508 of their siblings. The&#xD;
      investigators contact new 5-year childhood cancer survivors at regular intervals, and&#xD;
      continuously analyse and publish data and findings. By 2022, the investigators have contacted&#xD;
      3443 childhood cancer survivors for a follow-up questionnaire and will continue with this at&#xD;
      regular intervals.&#xD;
&#xD;
      Funding: Swiss Cancer League/ Swiss Cancer Research (Grant No: KLS/KFS-4825-01-2019),&#xD;
      Stiftung für krebskranke Kinder (Regio basiliensis) and Kinderkrebshilfe Schweiz.&#xD;
    </textblock>
  </detailed_description>
  <overall_status>Recruiting</overall_status>
  <start_date type="Actual">January 1, 2007</start_date>
  <completion_date type="Anticipated">January 2050</completion_date>
  <primary_completion_date type="Anticipated">January 2050</primary_completion_date>
  <study_type>Observational [Patient Registry]</study_type>
  <has_expanded_access>No</has_expanded_access>
  <study_design_info>
    <observational_model>Cohort</observational_model>
    <time_perspective>Prospective</time_perspective>
  </study_design_info>
  <target_duration>50 Years</target_duration>
  <primary_outcome>
    <measure>Long-term outcomes of survivors of childhood and adolescent cancer</measure>
    <time_frame>Baseline medical information and questionnaire data collection among those who survived at least 5 years, follow-up data collection at regular intervals (+/- every 5 years, 40 years) afterwards.</time_frame>
    <description>Incidence and spectrum of various somatic and psychosocial outcomes including describing the cause-specific long-term mortality, the number of patients with second primary malignancies and somatic health effects, and describe medication use, mental health status, educational achievements, and health-related quality of life of childhood cancer survivors as assessed by questionnaires and data from the Swiss Childhood Cancer Registry.</description>
  </primary_outcome>
  <secondary_outcome>
    <measure>Risk factors of long-term outcomes of survivors of childhood and adolescent cancer</measure>
    <time_frame>Baseline medical information and questionnaire data collection among those who survived at least 5 years, follow-up data collection at regular intervals (+/- every 5 years, 40 years) afterwards.</time_frame>
    <description>Association of long-term outcomes with risk factors like tumour, treatment modalities, and demographic characteristics as assessed by questionnaires and data from the Swiss Childhood Cancer Registry.</description>
  </secondary_outcome>
  <enrollment type="Anticipated">3626</enrollment>
  <condition>Childhood Cancer</condition>
  <eligibility>
    <study_pop>
      <textblock>
        Childhood cancer survivors: All living individuals who were diagnosed with cancer at age&#xD;
        &lt;20 years, have survived at least 5 years after cancer diagnosis, and who were Swiss&#xD;
        residents when they were diagnosed.&#xD;
&#xD;
        Siblings: brothers and sisters of childhood cancer survivors.&#xD;
      </textblock>
    </study_pop>
    <sampling_method>Non-Probability Sample</sampling_method>
    <criteria>
      <textblock>
        Inclusion Criteria:&#xD;
&#xD;
          -  Who were diagnosed with cancer at age &lt;20 years&#xD;
&#xD;
          -  Who have survived at least 5 years after cancer diagnosis&#xD;
&#xD;
          -  Who were Swiss residents when they were diagnosed, and&#xD;
&#xD;
          -  Who gave informed consent&#xD;
      </textblock>
    </criteria>
    <gender>All</gender>
    <minimum_age>5 Years</minimum_age>
    <maximum_age>N/A</maximum_age>
    <healthy_volunteers>Accepts Healthy Volunteers</healthy_volunteers>
  </eligibility>
  <overall_official>
    <last_name>Claudia E Kuehni, Prof.</last_name>
    <role>Study Director</role>
    <affiliation>Institute of Social and Preventive Medicine (ISPM), Univeristy of Bern</affiliation>
  </overall_official>
  <overall_contact>
    <last_name>Claudia E Kuehni, Prof.</last_name>
    <phone>+41 (0)31 631 35 07</phone>
    <email>claudia.kuehni@unibe.ch</email>
  </overall_contact>
  <location>
    <facility>
      <name>Institute of Social and Preventive Medicine (ISPM), University of Bern</name>
      <address>
        <city>Bern</city>
        <zip>3012</zip>
        <country>Switzerland</country>
      </address>
    </facility>
    <status>Recruiting</status>
    <contact>
      <last_name>Claudia E Kuehni, Prof.</last_name>
      <phone>+41 (0)31 631 35 07</phone>
      <email>claudia.kuehni@unibe.ch</email>
    </contact>
  </location>
  <location_countries>
    <country>Switzerland</country>
  </location_countries>
  <link>
    <url>https://childhoodcancerregistry.ch</url>
    <description>Swiss Childhood Cancer Registry</description>
  </link>
  <link>
    <url>https://www.swiss-ccss.ch</url>
    <description>Swiss Childhood Cancer Survivor Study, SCCSS</description>
  </link>
  <results_reference>
    <citation>Kasteler R, Weiss A, Schindler M, Sommer G, Latzin P, von der Weid NX, Ammann RA, Kuehni CE; Swiss Pediatric Oncology Group (SPOG). Long-term pulmonary disease among Swiss childhood cancer survivors. Pediatr Blood Cancer. 2018 Jan;65(1). doi: 10.1002/pbc.26749. Epub 2017 Sep 4.</citation>
    <PMID>28868646</PMID>
  </results_reference>
  <results_reference>
    <citation>Rueegg CS, Gianinazzi ME, Michel G, Zwahlen M, von der Weid NX, Kuehni CE; and the Swiss Paediatric Oncology Group (SPOG). No evidence of response bias in a population-based childhood cancer survivor questionnaire survey - Results from the Swiss Childhood Cancer Survivor Study. PLoS One. 2017 May 2;12(5):e0176442. doi: 10.1371/journal.pone.0176442. eCollection 2017.</citation>
    <PMID>28463966</PMID>
  </results_reference>
  <results_reference>
    <citation>Weiss A, Sommer G, Kuonen R, Scheinemann K, Grotzer M, Kompis M, Kuehni CE; Swiss Paediatric Oncology Group (SPOG). Validation of questionnaire-reported hearing with medical records: A report from the Swiss Childhood Cancer Survivor Study. PLoS One. 2017 Mar 23;12(3):e0174479. doi: 10.1371/journal.pone.0174479. eCollection 2017.</citation>
    <PMID>28333999</PMID>
  </results_reference>
  <results_reference>
    <citation>Belle F, Wengenroth L, Weiss A, Sommer G, Beck Popovic M, Ansari M, Bochud M, Kuehni C; Swiss Paediatric Oncology Group (SPOG). Low adherence to dietary recommendations in adult childhood cancer survivors. Clin Nutr. 2017 Oct;36(5):1266-1274. doi: 10.1016/j.clnu.2016.08.012. Epub 2016 Oct 20.</citation>
    <PMID>28277304</PMID>
  </results_reference>
  <results_reference>
    <citation>Weiss A, Sommer G, Kasteler R, Scheinemann K, Grotzer M, Kompis M, Kuehni CE; Swiss Pediatric Oncology Group (SPOG). Long-term auditory complications after childhood cancer: A report from the Swiss Childhood Cancer Survivor Study. Pediatr Blood Cancer. 2017 Feb;64(2):364-373. doi: 10.1002/pbc.26212. Epub 2016 Sep 21.</citation>
    <PMID>27650356</PMID>
  </results_reference>
  <results_reference>
    <citation>Wengenroth L, Sommer G, Schindler M, Spycher BD, von der Weid NX, Stutz-Grunder E, Michel G, Kuehni CE; Swiss Paediatric Oncology Group (SPOG). Income in Adult Survivors of Childhood Cancer. PLoS One. 2016 May 23;11(5):e0155546. doi: 10.1371/journal.pone.0155546. eCollection 2016.</citation>
    <PMID>27213682</PMID>
  </results_reference>
  <results_reference>
    <citation>Wengenroth L, Gianinazzi ME, Rueegg CS, Luer S, Bergstraesser E, Kuehni CE, Michel G. Health-related quality of life in young survivors of childhood cancer. Qual Life Res. 2015 Sep;24(9):2151-61. doi: 10.1007/s11136-015-0961-3. Epub 2015 Mar 18.</citation>
    <PMID>25784561</PMID>
  </results_reference>
  <results_reference>
    <citation>Wengenroth L, Rueegg CS, Michel G, Gianinazzi ME, Essig S, von der Weid NX, Grotzer M, Kuehni CE; Swiss Paediatric Oncology Group SPOG. Concentration, working speed and memory: cognitive problems in young childhood cancer survivors and their siblings. Pediatr Blood Cancer. 2015 May;62(5):875-82. doi: 10.1002/pbc.25396. Epub 2015 Feb 2.</citation>
    <PMID>25645276</PMID>
  </results_reference>
  <results_reference>
    <citation>Wengenroth L, Rueegg CS, Michel G, Essig S, Ammann RA, Bergstraesser E, Kuehni CE; Swiss Paediatric Oncology Group (SPOG). Life partnerships in childhood cancer survivors, their siblings, and the general population. Pediatr Blood Cancer. 2014 Mar;61(3):538-45. doi: 10.1002/pbc.24821. Epub 2013 Oct 18.</citation>
    <PMID>24136901</PMID>
  </results_reference>
  <results_reference>
    <citation>Gianinazzi ME, Rueegg CS, von der Weid NX, Niggli FK, Kuehni CE, Michel G; Swiss Paediatric Oncology Group (SPOG). Mental health-care utilization in survivors of childhood cancer and siblings: the Swiss childhood cancer survivor study. Support Care Cancer. 2014 Feb;22(2):339-49. doi: 10.1007/s00520-013-1976-3. Epub 2013 Oct 1.</citation>
    <PMID>24081625</PMID>
  </results_reference>
  <results_reference>
    <citation>Gianinazzi ME, Essig S, Rueegg CS, von der Weid NX, Brazzola P, Kuehni CE, Michel G; Swiss Paediatric Oncology Group (SPOG). Information provision and information needs in adult survivors of childhood cancer. Pediatr Blood Cancer. 2014 Feb;61(2):312-8. doi: 10.1002/pbc.24762. Epub 2013 Sep 9.</citation>
    <PMID>24019260</PMID>
  </results_reference>
  <results_reference>
    <citation>Rueegg CS, Gianinazzi ME, Rischewski J, Beck Popovic M, von der Weid NX, Michel G, Kuehni CE. Health-related quality of life in survivors of childhood cancer: the role of chronic health problems. J Cancer Surviv. 2013 Dec;7(4):511-22. doi: 10.1007/s11764-013-0288-4. Epub 2013 Jun 20.</citation>
    <PMID>23784593</PMID>
  </results_reference>
  <results_reference>
    <citation>Rueegg CS, Gianinazzi ME, Michel G, von der Weid NX, Bergstraesser E, Kuehni CE; Swiss Paediatric Oncology Group (SPOG). Do childhood cancer survivors with physical performance limitations reach healthy activity levels? Pediatr Blood Cancer. 2013 Oct;60(10):1714-20. doi: 10.1002/pbc.24595. Epub 2013 May 16.</citation>
    <PMID>23681516</PMID>
  </results_reference>
  <results_reference>
    <citation>Gianinazzi ME, Rueegg CS, Wengenroth L, Bergstraesser E, Rischewski J, Ammann RA, Kuehni CE, Michel G; for Swiss Pediatric Oncology Group (SPOG). Adolescent survivors of childhood cancer: are they vulnerable for psychological distress? Psychooncology. 2013 Sep;22(9):2051-8. doi: 10.1002/pon.3249. Epub 2013 Feb 11.</citation>
    <PMID>23401292</PMID>
  </results_reference>
  <results_reference>
    <citation>Rueegg CS, Michel G, Wengenroth L, von der Weid NX, Bergstraesser E, Kuehni CE; Swiss Paediatric Oncology Group (SPOG). Physical performance limitations in adolescent and adult survivors of childhood cancer and their siblings. PLoS One. 2012;7(10):e47944. doi: 10.1371/journal.pone.0047944. Epub 2012 Oct 17.</citation>
    <PMID>23082232</PMID>
  </results_reference>
  <results_reference>
    <citation>Kuehni CE, Rueegg CS, Michel G, Rebholz CE, Strippoli MP, Niggli FK, Egger M, von der Weid NX; Swiss Paediatric Oncology Group (SPOG). Cohort profile: the Swiss childhood cancer survivor study. Int J Epidemiol. 2012 Dec;41(6):1553-64. doi: 10.1093/ije/dyr142. Epub 2011 Oct 27. No abstract available.</citation>
    <PMID>22736394</PMID>
  </results_reference>
  <results_reference>
    <citation>Essig S, von der Weid NX, Strippoli MP, Rebholz CE, Michel G, Rueegg CS, Niggli FK, Kuehni CE; Swiss Pediatric Oncology Group (SPOG). Health-related quality of life in long-term survivors of relapsed childhood acute lymphoblastic leukemia. PLoS One. 2012;7(5):e38015. doi: 10.1371/journal.pone.0038015. Epub 2012 May 25.</citation>
    <PMID>22662262</PMID>
  </results_reference>
  <results_reference>
    <citation>Rueegg CS, von der Weid NX, Rebholz CE, Michel G, Zwahlen M, Grotzer M, Kuehni CE; Swiss Paediatric Oncology Group (SPOG). Daily physical activities and sports in adult survivors of childhood cancer and healthy controls: a population-based questionnaire survey. PLoS One. 2012;7(4):e34930. doi: 10.1371/journal.pone.0034930. Epub 2012 Apr 10.</citation>
    <PMID>22506058</PMID>
  </results_reference>
  <results_reference>
    <citation>Rebholz CE, Kuehni CE, Strippoli MP, Rueegg CS, Michel G, Hengartner H, Bergstraesser E, von der Weid NX; Swiss Pediatric Oncology Group (SPOG). Alcohol consumption and binge drinking in young adult childhood cancer survivors. Pediatr Blood Cancer. 2012 Feb;58(2):256-64. doi: 10.1002/pbc.23289. Epub 2011 Aug 29.</citation>
    <PMID>22162398</PMID>
  </results_reference>
  <results_reference>
    <citation>Kuehni CE, Strippoli MP, Rueegg CS, Rebholz CE, Bergstraesser E, Grotzer M, von der Weid NX, Michel G; Swiss Pediatric Oncology Group (SPOG). Educational achievement in Swiss childhood cancer survivors compared with the general population. Cancer. 2012 Mar 1;118(5):1439-49. doi: 10.1002/cncr.26418. Epub 2011 Aug 5.</citation>
    <PMID>21823113</PMID>
  </results_reference>
  <results_reference>
    <citation>Rebholz CE, von der Weid NX, Michel G, Niggli FK, Kuehni CE; Swiss Pediatric Oncology Group (SPOG). Follow-up care amongst long-term childhood cancer survivors: a report from the Swiss Childhood Cancer Survivor Study. Eur J Cancer. 2011 Jan;47(2):221-9. doi: 10.1016/j.ejca.2010.09.017. Epub 2010 Oct 11.</citation>
    <PMID>20943372</PMID>
  </results_reference>
  <results_reference>
    <citation>Michel G, Kuehni CE, Rebholz CE, Zimmermann K, Eiser C, Rueegg CS, von der Weid NX; Swiss Paediatric Oncology Group (SPOG). Can health beliefs help in explaining attendance to follow-up care? The Swiss childhood cancer survivor study. Psychooncology. 2011 Oct;20(10):1034-43. doi: 10.1002/pon.1823. Epub 2010 Aug 4.</citation>
    <PMID>20687196</PMID>
  </results_reference>
  <results_reference>
    <citation>Michel G, Rebholz CE, von der Weid NX, Bergstraesser E, Kuehni CE. Psychological distress in adult survivors of childhood cancer: the Swiss Childhood Cancer Survivor study. J Clin Oncol. 2010 Apr 1;28(10):1740-8. doi: 10.1200/JCO.2009.23.4534. Epub 2010 Mar 1.</citation>
    <PMID>20194864</PMID>
  </results_reference>
  <results_reference>
    <citation>Michel G, Gianinazzi ME, Eiser C, Bergstraesser E, Vetsch J, von der Weid N, Kuehni CE; Swiss Paediatric Oncology Group. Preferences for long-term follow-up care in childhood cancer survivors. Eur J Cancer Care (Engl). 2016 Nov;25(6):1024-1033. doi: 10.1111/ecc.12560. Epub 2016 Aug 23.</citation>
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  <results_reference>
    <citation>Rebholz CE, Rueegg CS, Michel G, Ammann RA, von der Weid NX, Kuehni CE, Spycher BD; Swiss Paediatric Oncology Group (SPOG). Clustering of health behaviours in adult survivors of childhood cancer and the general population. Br J Cancer. 2012 Jul 10;107(2):234-42. doi: 10.1038/bjc.2012.250. Epub 2012 Jun 21.</citation>
    <PMID>22722311</PMID>
  </results_reference>
  <results_reference>
    <citation>Marquis A, Strippoli MP, Spycher BD, Rebholz CE, von der Weid NX, Kuehni CE; Swiss Pediatric Oncology Group. Paracetamol, nonsteroidal anti-inflammatory drugs, and risk of asthma in adult survivors of childhood cancer. J Allergy Clin Immunol. 2011 Jan;127(1):270-2. doi: 10.1016/j.jaci.2010.08.044. Epub 2010 Nov 18. No abstract available.</citation>
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  <results_reference>
    <citation>Belle FN, Kasteler R, Schindera C, Bochud M, Ammann RA, von der Weid NX, Kuehni CE; Swiss Pediatric Oncology Group (SPOG). No evidence of overweight in long-term survivors of childhood cancer after glucocorticoid treatment. Cancer. 2018 Sep 1;124(17):3576-3585. doi: 10.1002/cncr.31599. Epub 2018 Aug 17.</citation>
    <PMID>30119140</PMID>
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    <citation>Belle FN, Wenke-Zobler J, Cignacco E, Spycher BD, Ammann RA, Kuehni CE, Zimmermann K. Overweight in childhood cancer patients at diagnosis and throughout therapy: A multicentre cohort study. Clin Nutr. 2019 Apr;38(2):835-841. doi: 10.1016/j.clnu.2018.02.022. Epub 2018 Mar 2.</citation>
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    <citation>Belle FN, Weiss A, Schindler M, Goutaki M, Bochud M, Zimmermann K, von der Weid N, Ammann RA, Kuehni CE. Overweight in childhood cancer survivors: the Swiss Childhood Cancer Survivor Study. Am J Clin Nutr. 2018 Jan 1;107(1):3-11. doi: 10.1093/ajcn/nqx006.</citation>
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    <citation>Kasteler R, Belle F, Schindera C, Barben J, Gumy-Pause F, Tinner EM, Kuehni CE; Swiss Pediatric Oncology Group (SPOG). Prevalence and reasons for smoking in adolescent Swiss childhood cancer survivors. Pediatr Blood Cancer. 2019 Jan;66(1):e27438. doi: 10.1002/pbc.27438. Epub 2018 Sep 21.</citation>
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    <citation>Clemens E, van den Heuvel-Eibrink MM, Mulder RL, Kremer LCM, Hudson MM, Skinner R, Constine LS, Bass JK, Kuehni CE, Langer T, van Dalen EC, Bardi E, Bonne NX, Brock PR, Brooks B, Carleton B, Caron E, Chang KW, Johnston K, Knight K, Nathan PC, Orgel E, Prasad PK, Rottenberg J, Scheinemann K, de Vries ACH, Walwyn T, Weiss A, Am Zehnhoff-Dinnesen A, Cohn RJ, Landier W; International Guideline Harmonization Group ototoxicity group. Recommendations for ototoxicity surveillance for childhood, adolescent, and young adult cancer survivors: a report from the International Late Effects of Childhood Cancer Guideline Harmonization Group in collaboration with the PanCare Consortium. Lancet Oncol. 2019 Jan;20(1):e29-e41. doi: 10.1016/S1470-2045(18)30858-1.</citation>
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    <citation>Reulen RC, Wong KF, Bright CJ, Winter DL, Alessi D, Allodji RM, Bagnasco F, Bardi E, Bautz A, Byrne J, Feijen EA, Fidler-Benaoudia MM, Diallo I, Garwicz S, Grabow D, Gudmundsdottir T, Guha J, Haddy N, Hogsholt S, Jankovic M, Kaatsch P, Kaiser M, Kuonen R, Linge H, Ofstaas H, Ronckers CM, Hau EM, Skinner R, van Leeuwen FE, Teepen JC, Veres C, Zrafi W, Debiche G, Llanas D, Terenziani M, Vu-Bezin G, Wesenberg F, Wiebe T, Sacerdote C, Jakab Z, Haupt R, Lahteenmaki PM, Zadravec Zaletel L, Kuehni CE, Winther JF, de Vathaire F, Kremer LC, Hjorth L, Hawkins MM. Risk of digestive cancers in a cohort of 69 460 five-year survivors of childhood cancer in Europe: the PanCareSurFup study. Gut. 2020 Nov 2:gutjnl-2020-322237. doi: 10.1136/gutjnl-2020-322237. Online ahead of print.</citation>
    <PMID>33139271</PMID>
  </results_reference>
  <results_reference>
    <citation>Otth M, Schindera C, Gungor T, Ansari M, Scheinemann K, Belle FN, Latzin P, von der Weid N, Kuehni CE; Swiss Pediatric Oncology Group (SPOG). Transplant characteristics and self-reported pulmonary outcomes in Swiss childhood cancer survivors after hematopoietic stem cell transplantation-a cohort study. Bone Marrow Transplant. 2021 May;56(5):1065-1076. doi: 10.1038/s41409-020-01137-1. Epub 2020 Nov 25.</citation>
    <PMID>33239655</PMID>
  </results_reference>
  <results_reference>
    <citation>Norsker FN, Pedersen C, Armstrong GT, Robison LL, McBride ML, Hawkins M, Kuehni CE, de Vathaire F, Berbis J, Kremer LC, Haupt R, Kenborg L, Winther JF. Late Effects in Childhood Cancer Survivors: Early Studies, Survivor Cohorts, and Significant Contributions to the Field of Late Effects. Pediatr Clin North Am. 2020 Dec;67(6):1033-1049. doi: 10.1016/j.pcl.2020.07.002.</citation>
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    <citation>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 H, 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. Usefulness of current candidate genetic markers to identify childhood cancer patients at risk for platinum-induced ototoxicity: Results of the European PanCareLIFE cohort study. Eur J Cancer. 2020 Oct;138:212-224. doi: 10.1016/j.ejca.2020.07.019. Epub 2020 Sep 6.</citation>
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  <verification_date>June 2023</verification_date>
  <study_first_submitted>September 20, 2017</study_first_submitted>
  <study_first_submitted_qc>September 25, 2017</study_first_submitted_qc>
  <study_first_posted type="Actual">September 29, 2017</study_first_posted>
  <last_update_submitted>June 19, 2023</last_update_submitted>
  <last_update_submitted_qc>June 19, 2023</last_update_submitted_qc>
  <last_update_posted type="Actual">June 22, 2023</last_update_posted>
  <responsible_party>
    <responsible_party_type>Sponsor</responsible_party_type>
  </responsible_party>
  <keyword>Late effects</keyword>
  <keyword>Childhood cancer survivors</keyword>
  <keyword>Swiss Childhood Cancer Registry</keyword>
  <keyword>Europe</keyword>
  <patient_data>
    <sharing_ipd>No</sharing_ipd>
  </patient_data>
  <!-- Results have not yet been posted for this study                                          -->
</clinical_study>


download date: ClinicalTrials.gov processed this data on September 20, 2023
link text: Link to the current ClinicalTrials.gov record.
url: https://clinicaltrials.gov/ct2/show/NCT03297034
org study id: SCCSS
nct id: NCT03297034
lead sponsor: 
collaborator: 
has dmc: No
is fda regulated drug: No
is fda regulated device: No
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, 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.

      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.

      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 project: From 2008-2021, the investigators have contacted 5949
      childhood cancer survivors diagnosed between 1976-2015 and 1508 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.

      Funding: Swiss Cancer League/ Swiss Cancer Research (Grant No: KLS/KFS-4825-01-2019),
      Stiftung für krebskranke Kinder (Regio basiliensis) and Kinderkrebshilfe Schweiz.
observational model: Cohort
time perspective: Prospective
measure: Long-term outcomes of survivors of childhood and adolescent cancer
time frame: Baseline medical information and questionnaire data collection among those who survived at least 5 years, follow-up data collection at regular intervals (+/- every 5 years, 40 years) afterwards.
description: Incidence and spectrum of various somatic and psychosocial outcomes including describing the cause-specific long-term mortality, the number of patients with second primary malignancies and somatic health effects, and describe medication use, mental health status, educational achievements, and health-related quality of life of childhood cancer survivors as assessed by questionnaires and data from the Swiss Childhood Cancer Registry.
measure: Risk factors of long-term outcomes of survivors of childhood and adolescent cancer
time frame: Baseline medical information and questionnaire data collection among those who survived at least 5 years, follow-up data collection at regular intervals (+/- every 5 years, 40 years) afterwards.
description: Association of long-term outcomes with risk factors like tumour, treatment modalities, and demographic characteristics as assessed by questionnaires and data from the Swiss Childhood Cancer Registry.
study pop: 
sampling method: Non-Probability Sample
criteria: 
gender: All
minimum age: 5 Years
maximum age: N/A
healthy volunteers: Accepts Healthy Volunteers
last name: Claudia E Kuehni, Prof.
role: Study Director
affiliation: Institute of Social and Preventive Medicine (ISPM), Univeristy of Bern
last name: Claudia E Kuehni, Prof.
phone: +41 (0)31 631 35 07
email: claudia.kuehni@unibe.ch
facility: 
status: Recruiting
contact: 
country: Switzerland
url: https://childhoodcancerregistry.ch
description: Swiss Childhood Cancer Registry
url: https://www.swiss-ccss.ch
description: Swiss Childhood Cancer Survivor Study, SCCSS
citation: Kasteler R, Weiss A, Schindler M, Sommer G, Latzin P, von der Weid NX, Ammann RA, Kuehni CE; Swiss Pediatric Oncology Group (SPOG). Long-term pulmonary disease among Swiss childhood cancer survivors. Pediatr Blood Cancer. 2018 Jan;65(1). doi: 10.1002/pbc.26749. Epub 2017 Sep 4.
PMID: 28868646
citation: Rueegg CS, Gianinazzi ME, Michel G, Zwahlen M, von der Weid NX, Kuehni CE; and the Swiss Paediatric Oncology Group (SPOG). No evidence of response bias in a population-based childhood cancer survivor questionnaire survey - Results from the Swiss Childhood Cancer Survivor Study. PLoS One. 2017 May 2;12(5):e0176442. doi: 10.1371/journal.pone.0176442. eCollection 2017.
PMID: 28463966
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PMID: 31738177
citation: 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.
PMID: 31878342
citation: 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.
PMID: 31750617
citation: 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.
PMID: 32939381
citation: 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.
PMID: 33423008
citation: 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.
PMID: 34717553
citation: 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.
PMID: 34067298
citation: 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.
PMID: 36444554
citation: 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.
PMID: 36319851
citation: 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.
PMID: 34750563
citation: 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.
PMID: 35723448
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