Childhood CancerSCCSSNCT03297034
Swiss Childhood Cancer Survivor Study
An observational study of Childhood Cancer, run by University of Bern at 1 site in Switzerland.
Trial 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. Read more about this study
- Who is it for?
- Ages 5 years and olderHealthy volunteers can take part
- Conditions the study is for
- Childhood Cancer
- How many people
- 4,136 participants
- Where
- 1 siteSwitzerland
- Study dates
- 1 Jan 2007to Jan 2050
- How long will I take part?
- 50 Years
- Phase
- Observational
- Are there results?
- Not yet: the study is under way
Key requirements
Who can take part, as listed by the sponsor. Only the study team can confirm whether you are eligible, so take this list to your doctor.
- Ages 5 years and older
- All sexes
- Healthy volunteers accepted
- Child, Adult, Older adult
Study population: Childhood cancer survivors: All living individuals who were diagnosed with cancer at age <20 years, have survived at least 5 years after cancer diagnosis, and who were Swiss residents when they were diagnosed. Siblings: brothers and sisters of childhood cancer survivors.
Who may be able to join
- 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
Who cannot join
None listed.
Trial locations and contacts
1 site in 1 country. Contact the study team or a site near you to ask about taking part.
Switzerland1 site, 1 recruiting
- Recruiting
Institute of Social and Preventive Medicine (ISPM), University of Bern
Bern, Canton of Bern, 3012
Claudia E Kuehni, Prof., +41 (0)31 631 35 07, claudia.kuehni@unibe.ch
About this study
Official title: Swiss Childhood Cancer Survivor Study (SCCSS)
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.
Read the 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 2008-2026, the investigators have contacted 7867 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 369 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
- Keywords
- Late effects, Childhood cancer survivors, Swiss Childhood Cancer Registry, Europe
- Medical subject headings
- Neoplasms
What is being measured
The primary outcome is the main question the study is designed to answer.
Long-term outcomes of survivors of childhood and adolescent cancer
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.
Measured: 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.
Secondary outcomes (1)
Risk factors of long-term outcomes of survivors of childhood and adolescent cancer
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.
Measured: 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.
Timeline
From the start of the study to its completion; the mark is today. Estimated dates are the sponsor’s plan.
- First posted29 Sep 2017
- Study start1 Jan 2007
- Primary completionJan 2050 (estimated)
- Study completionJan 2050 (estimated)
Resources
- Official record on ClinicalTrials.govThe registry entry this page is built from, with its full change history.
- Publications (76)Papers the sponsor has linked to this study.
- Other trials for Childhood CancerStudies of the same condition, open and under way.
- More trials run by University of BernThe sponsor's other registered studies.
- What the trial phases meanHow a treatment moves from first tests in people to approval.
More details
For doctors and researchers: how the study is designed, who runs it, and its registry IDs.
Study design
- Study type
- Observational
- Observational model
- Cohort
- Time perspective
- Prospective
- Enrolment
- 4,136 participants (estimated)
- Target duration
- 50 Years
Sponsor and investigators
- Lead sponsor
- University of Bern
- Sponsor type
- University, hospital or other
- Collaborators
- Swiss Pediatric Oncology Group
- Responsible party
- Sponsor
- Investigators
- Claudia E Kuehni, Prof., Study director, Institute of Social and Preventive Medicine (ISPM), Univeristy of Bern
IDs, dates and publications
- ClinicalTrials.gov ID
- NCT03297034
- Sponsor's protocol ID
- SCCSS
- Acronym
- SCCSS
- Status last verified
- Jun 2026
- First submitted
- 20 Sep 2017
- Last updated
- 29 Jun 2026
- Results posted
- No
- Data monitoring committee
- No
- FDA-regulated drug
- No
- FDA-regulated device
- No
- Individual data sharing
- No
Publications
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.
PubMed 28868646Rueegg 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.
PubMed 28463966Weiss 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.
PubMed 28333999Belle 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.
PubMed 28277304Weiss 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.
PubMed 27650356Wengenroth 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.
PubMed 27213682Wengenroth 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.
PubMed 25784561Wengenroth 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.
PubMed 25645276Wengenroth 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.
PubMed 24136901Gianinazzi 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.
PubMed 24081625Gianinazzi 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.
PubMed 24019260Rueegg 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.
PubMed 23784593Rueegg 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.
PubMed 23681516Gianinazzi 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.
PubMed 23401292Rueegg 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.
PubMed 23082232
Study at a glance
From the registry record, last updated by the sponsor on 29 Jun 2026. Recruitment status is as the sponsor reported it: confirm with the study team.
- Official title
- Swiss Childhood Cancer Survivor Study (SCCSS)
- ClinicalTrials.gov ID
- NCT03297034
- Acronym / sponsor ID
- SCCSS / SCCSS
- Conditions
- Childhood Cancer
- Keywords
- Late effects, Childhood cancer survivors, Swiss Childhood Cancer Registry, Europe
- Study type
- Observational
- Recruitment status
- Recruiting
- Enrolment
- 4,136 participants (estimated)
- Lead sponsor
- University of BernUniversity, hospital or other
- Collaborators
- Swiss Pediatric Oncology Group
- Study start
- 1 Jan 2007 (actual)
- Primary completion
- Jan 2050 (estimated)
- Study completion
- Jan 2050 (estimated)
- First posted
- 29 Sep 2017 (actual)
- Results
- Not posted in the source record
Clinical summary
The research question as the sponsor registered it. This describes what the study plans to test, not what it found.
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 2008-2026, the investigators have contacted 7867 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 369 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.
Study design
- Observational model
- Cohort
- Time perspective
- Prospective
- Target follow-up
- 50 Years
Who may qualify
- Ages
- 5 years and older
- Sex
- All
- Healthy volunteers
- Accepted
- Age groups
- Child, Adult, Older adult
- Study population
- Childhood cancer survivors: All living individuals who were diagnosed with cancer at age <20 years, have survived at least 5 years after cancer diagnosis, and who were Swiss residents when they were diagnosed. Siblings: brothers and sisters of childhood cancer survivors.
Key inclusion criteria (4 listed)
- 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
Key exclusion criteria (0 listed)
Eligibility is decided by the study team after screening; this overview does not establish that a patient qualifies. Full inclusion and exclusion criteria.
Primary outcome
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.
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.
1 secondary outcome
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.
Results and safety
This study is still under way. Results are not available in the source record yet.
Research links
- Official record on ClinicalTrials.govLast updated by the sponsor 29 Jun 2026.
- Results publication: PubMed 28868646Kasteler 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.
- Results publication: PubMed 28463966Rueegg 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.
- Results publication: PubMed 28333999Weiss 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.
- Results publication: PubMed 28277304Belle 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.
- Results publication: PubMed 27650356Weiss 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.
- Results publication: PubMed 27213682Wengenroth 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.
- Results publication: PubMed 25784561Wengenroth 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.
- Results publication: PubMed 25645276Wengenroth 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.
- Results publication: PubMed 24136901Wengenroth 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.
- Results publication: PubMed 24081625Gianinazzi 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.
- Results publication: PubMed 24019260Gianinazzi 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.
- Results publication: PubMed 23784593Rueegg 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.
- Swiss Childhood Cancer RegistryLink provided by the sponsor.
- Swiss Childhood Cancer Survivor Study, SCCSSLink provided by the sponsor.
- Individual participant dataSharing planned: No
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Referral and contact
AzTrials does not enrol participants or take referrals. Contact the study team or a site listed below; they decide who can take part.
Claudia E Kuehni, Prof. study director
Institute of Social and Preventive Medicine (ISPM), Univeristy of Bern
1 site in 1 country: see every site and its status.
Questions about this trial
What is this clinical trial studying?
An observational study of Childhood Cancer, run by University of Bern at 1 site in Switzerland.
The full registered description is in the About this study section and the official record.
Who may be eligible to take part?
The sponsor lists 4 inclusion and 0 exclusion criteria. Eligibility is decided by the study team after screening, so read the full criteria and contact a listed site.
Is this clinical trial currently recruiting?
The record says: looking for participants now, as of the sponsor's last update on 29 Jun 2026. Status can change between updates, so confirm with the study contact before making plans.
Where is the study taking place?
The record lists 1 site in Switzerland. Whether a site is taking part right now should be confirmed with that site. See every site.
What are the possible benefits and risks?
They depend on the study and the treatment, and no study can promise a benefit. The study team explains the known risks during informed consent, before anyone joins; the record itself does not list them.
Are results available for this study?
This study is still under way. Results are not available in the source record yet.
How can a doctor refer a patient or contact the research team?
Contact Claudia E Kuehni, Prof. (+41 (0)31 631 35 07, claudia.kuehni@unibe.ch), or a site near the patient. AzTrials does not enrol participants or take referrals.
What does the primary outcome 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.). It is what the study was designed to measure, not a finding.
Where can I read the original study information?
On the ClinicalTrials.gov record for NCT03297034, which also lists 76 linked publications.
Does a listing mean the treatment is approved or proven to work?
No. A listing means the study is registered. It does not show that the treatment is safe, works, or is approved by a regulator.
How often is this information updated?
AzTrials copies changed records from ClinicalTrials.gov every night and reloads the whole registry every week. The sponsor last updated this record on 29 Jun 2026; AzTrials last refreshed its copy on 6 Nov 2026.