PUBLICATIONS
PanCareSurPass is an EU-funded project looking at how to more widely implement the digital Survivorship Passport (SurPass) to improve survivorship care for survivors of childhood and adolescent cancer in Europe. PanCareSurPass will develop, test and implement the SurPass in participating countries and will develop material to support implementation in other countries
| Title | Authors | Link | PLAIN summary | |
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| Barriers and facilitators to implementation of the interoperable Survivorship Passport (SurPass) v2.0 in 6 European countries: a PanCareSurPass online survey study | van den Oever S et al. | J Cancer Surviv 18, 928–940 (2024). https://doi.org/10.1007/s11764-023-01335-y | PLAIN summary | |
| Barriers and facilitators to the implementation of a new European eHealth solution (SurPass v2.0): the PanCareSurPass Open Space study | de Beijer IAE et al. | J Cancer Surviv (2023). https://doi.org/10.1007/s11764-023-01498-8 |
PLAIN summary | |
| European recommendations for short-term surveillance of health problems in childhood, adolescent and young adult cancer survivors from the end of treatment to 5 years after diagnosis: a PanCare guideline | de Beijer IAE et al. | J Cancer Surviv (2023). https://doi.org/10.1007/s11764-023-01493-z |
PLAIN summary | |
| Scaling up and implementing the digital Survivorship Passport tool in routine clinical care – The European multidisciplinary PanCareSurPass project | Filbert AL et al. | Eur. J. Cancer 2024 march 17;202;114029 https://doi.org/10.1016/j.ejca.2024.114029 |
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| Factors Influencing Implementation of the Survivorship Passport: The IT Perspective | Chronaki C et al. | Stud Health Technol Inform. 2022 May 16;293:161-168. https://doi.org/10.3233/SHTI220363 |
PanCareFollowUp is an EU-funded project looking at how to best deliver survivorship care to survivors of childhood and adolescent cancer in Europe. The aim of PanCareFollowUp is to deliver care according to recently developed guidelines using an innovative model for person centred care that empowers survivors and supports self-management.
| Title | Authors | Link | PLAIN language summary | |
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| Barriers, facilitators, and other factors associated with health behaviors in childhood, adolescent, and young adult cancer survivors: A systematic review | de Beijer et al. | Cancer Medicine 2024, 13(12):e7361. https://doi.org/10.1002/cam4.7361 | coming soon | |
| Healthcare providers’ expected barriers and facilitators to the implementation of person‐centered long‐term follow‐up care for childhood cancer survivors: A PanCareFollowUp study | Breij et al. | Cancer Medicine 2024, 13(20), e70225. https://doi.org/10.1002/cam4.70225 | coming soon | |
| Perceived barriers and facilitators to health behaviors in European childhood cancer survivors | Bouwman E et al. | Cancer Medicine 2023, 12(11): 12035-12959 https://doi.org/10.1002/cam4.5911 |
PLAIN summary | |
| Healthcare professionals’ perceived barriers and facilitators of health behavior support provision: A qualitative study | Bouwman E et al. | Cancer Medicine. 2023;12:7414–7426. https://doi.org/10.1002/cam4.5445 |
PLAIN summary | |
| Person-centred online lifestyle coaching in childhood, adolescent, and young adult cancer survivors: protocol of the multicentre PanCareFollowUp lifestyle intervention feasibility study | Bouwman E et al. | Pilot and Feasibility Studies (2022) 8:260 https://doi.org/10.1186/s40814-022-01221-x |
PLAIN summary | |
| Evaluating the feasibility, effectiveness and costs of implementing person-centred follow-up care for childhood cancer survivors in four European countries: the PanCareFollowUp Care prospective cohort study protocol | van Kalsbeek RJ et al. | BMJ Open 2022;12:e063134. https://doi.org/10.1136/bmjopen-2022-063134 |
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| The PanCareFollowUp Care Intervention: A European harmonised approach to person-centred guideline-based survivorship care after childhood, adolescent and young adult cancer | van Kalsbeek RJ et al. | European Journal of Cancer 162; Feb 2022; 34 – 44 https://doi.org/10.1016/j.ejca.2021.10.035 |
PLAIN summary | |
| European PanCareFollowUp Recommendations for surveillance of late effects of childhood, adolescent, and young adult cancer | van Kalsbeek RJ et al. | European Journal of Cancer 154; Sep 2021; 316 – 328 https://doi.org/10.1016/j.ejca.2021.06.004 |
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| The European multistakeholder PanCareFollowUp project: novel, person-centred survivorship care to improve care quality, effectiveness, cost-effectiveness and accessibility for cancer survivors and caregivers | van Kalsbeek RJ et al. | European Journal of Cancer 153; Aug 2021; 74 – 85 https://doi.org/10.1016/j.ejca.2021.05.030 |
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PanCareLIFE was a 5-year (2013-8) EU Framework 7 Programme in the Health Theme that studied the impact of treatment regimes on the long-term health of childhood cancer survivors. Specifically, PanCareLIFE evaluated the risks of impairments in female fertility, in hearing, and in quality of life. PanCareLIFE also developed two guidelines for fertility preservation, and will disseminate widely the results from this project. Below an overview of publications that were made within the PanCareLIFE project.
| Title | Authors | Link | |
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| Genetic variation in gonadal impairment in female survivors of childhood cancer: design of a PanCareLIFE study. | van der Kooi ALF et al. | BMC Cancer 18, 930. https://doi.org/10.1186/s12885-018-4834-3 |
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| PanCareLIFE: The scientific basis for a European project to improve long-term care regarding fertility, ototoxicity, and health related quality of life after cancer occurring among children and adolescents. | Byrne J et al. | Eur J Cancer 103, 227-237, 2018. https://doi.org/10.1016/j.ejca.2018.08.007 |
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| Fertility Among Female Survivors of Childhood, Adolescent, and Young Adult Cancer: Protocol for Two Pan-European Studies (PanCareLIFE). | van den Berg M et al. | JMIR Res Protoc 7, e10824, 2018. https://doi.org/10.2196%2F10824 |
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| Genetic determinants of ototoxicity during and after childhood cancer treatment: protocol for the PanCareLIFE study. | Clemens E et al. | JMIR Res Protoc 8, e11868, 2019. https://doi.org/10.2196%2F11868 |
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| Genetic variation of cisplatin-induced ototoxicity in non-cranial-irradiated pediatric patients using a candidate gene approach: The International PanCareLIFE Study. | Clemens E et al. | Pharmacogenomics J 20, 294–305, 2020. https://doi.org/10.1038/s41397-019-0113-1 |
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| Association of candidate pharmacogenetic markers with platinum-induced ototoxicity: PanCareLIFE dataset. | Langer T et al. | Data in Brief 32:106227, 2020. https://doi.org/10.1016/j.dib.2020.106227 |
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| Usefulness of current candidate genetic markers to identify childhood cancer patients at risk for platinum-induced ototoxicity: Results of the European PanCareLIFE cohort study. | Langer T et al. | Eur J Cancer. 138, 212-224, 2020. https://doi.org/10.1016/j.ejca.2020.07.019 |
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| Possible modification of BRSK1 on the risk of alkylating chemotherapy-related reduced ovarian function, | van der Kooi ALF et al. | Human Reproduction deaa342, 2021. https://doi.org/10.1093/humrep/deaa342. |
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| Health-related quality of life in European childhood cancer survivors: protocol for a study within PanCareLIFE . | Calaminus G et al. | JMIR Res Protoc 2021, 10: e21851 https://doi.org/10.2196/21851 |
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| Treatment-related fertility impairment in long-term female childhood, adolescent and young adult cancer survivors: investigating dose-effect relationships in a European case-control study (PanCareLIFE). | van den Berg H et al. | Human Reproduction 0:1–13. 2021. https://doi.org/10.1093/humrep/deab035 |
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| Fertility preservation for female patients with childhood, adolescent, and young adult cancer: recommendations from the PanCareLIFE Consortium and the International Late Effects of Childhood Cancer Guideline Harmonization Group. | Mulder RL et al. | The Lancet Oncology 22, e45 – e56, 2021. https://doi.org/10.1016/S1470-2045(20)30594-5 |
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| Fertility preservation for male patients with childhood, adolescent, and young adult cancer: recommendations from the PanCareLIFE Consortium and the International Late Effects of Childhood Cancer Guideline Harmonization Group. | Mulder RL et al. | The Lancet Oncology 22, e57 – e67, 2021. https://doi.org/10.1016/S1470-2045(20)30582-9 |
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| Communication and ethical considerations for fertility preservation for patients with childhood, adolescent, and young adult cancer: recommendations from the PanCareLIFE Consortium and the International Late Effects of Childhood Cancer Guideline Harmonization Group. | Mulder RL et al. | The Lancet Oncology 22, e68 – e80, 2021. https://doi.org/10.1016/S1470-2045(20)30595-7 |
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| Managing a pan-European consortium on late effects among long-term survivors of childhood and adolescent cancer – the PanCareLIFE project. | Kaatsch P et al. | Int J Environ Res Public Health 2021, 18, 3918. https://doi.org/10.3390/ijerph18083918. |
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| TCERG1L allelic variation is associated with cisplatin-induced hearing loss in childhood cancer, a PanCareLIFE study. | Meijer AJM et al. | NPJ Precision Oncology; 5:64: February 2021. https://doi.org/10.1038/s41698-021-00178-z |
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| Fertility-Related Wishes and Concerns of Adolescent Cancer Patients and Their Parents. | Korte E et al. | J Adolesc Young Adult Oncol. 2020 Feb;9(1):55-62. https://doi.org/10.1089/jayao.2019.0064 |
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| Fertility education for adolescent cancer patients: Gaps in current clinical practice in Europe. | Korte E et al. | Eur J Cancer Care 2020 Sep. Sep;29(5):e13279. https://doi.org/10.1111/ecc.13279 |
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| Fertility knowledge and associated empowerment following an educational intervention for adolescent cancer patients. | Borgmann-Staudt A et al. | Psychooncology. 2019 Nov;28(11):2218-2225. https://doi.org/10.1002/pon.5210 |
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| Determinants of utilization of cryopreservation of germ cells in adolescent cancer patients in four European countries. | Balcerek M et al. | Eur J Pediatr. 2020 Jan;179(1):51-60. https://doi.org/10.1007/s00431-019-03459-9 |
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| PanCareLIFE: The scientific basis for a European project to improve long-term care regarding fertility, ototoxicity, and health related quality of life after cancer occurring among children and adolescents. | Byrne J et al. | Eur J Cancer 103, 227-237, 2018. https://doi.org/10.1016/j.ejca.2018.08.007 |
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| Fertility Among Female Survivors of Childhood, Adolescent, and Young Adult Cancer: Protocol for Two Pan-European Studies (PanCareLIFE). | van den Berg M et al. | JMIR Res Protoc 7, e10824, 2018. http://doi.org/10.2196/10824 |
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| Hearing loss and quality of life in survivors of paediatric CNS tumours and other cancers | Weiss A et al. | Qual Life Res 28, 515–521 (2019). https://doi.org/10.1007/s11136-018-2021-2 |
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| Europäische PanCare-Studien zu Spätfolgen nach Krebs im Kindes- und Jugendalter | Grabow D et al. | Onkologe 24, 754–759 (2018). https://doi.org/10.1007/s00761-018-0449-1 |
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| The influence of genetic variation on late toxicities in childhood cancer survivors | Clemens E et al. | Critical Reviews in Oncology / Hematology 126 (2018) 154–167 https://doi.org/10.1016/j.critrevonc.2018.04.001 |
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| Audiological monitoring in Swiss childhood cancer patients | Weiss A et al. | Pediatric Blood & Cancer, 10.1002/pbc.26877, 65, 3, (2017). https://doi.org/10.1002/pbc.26877 |
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| Hearing loss after platinum treatment is irreversible in noncranial irradiated childhood cancer survivors | Clemens E et al. | Pediatric Hematology and Oncology, 34(2), 120–129. https://doi.org/10.1080/08880018.2017.1323985 |
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| Socio-demographic impact of platinum-induced ototoxicity in long-term survivors of childhood cancer | Clemens E et al. | Curr Pediatr Res 2017; 21 (3): 470-479 https://www.researchgate.net/publication/325170052_Socio-demographic_impact_of_platinum-induced_ototoxicity_in_long-term_survivors_of_childhood_cancer |
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| Validation of questionnaire-reported hearing with medical records: A report from the Swiss Childhood Cancer Survivor Study | Weiss A et al. |
PLoS ONE 12 (3): e0174479. |
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| Determinants of ototoxicity in 451 platinum-treated Dutch survivors of childhood cancer: A DCOG late-effects study | Clemens et al. |
Eur J Cancer 2016 69:77-85 |
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| Longitudinal follow-up in female Childhood Cancer Survivors: no signs of accelerated ovarian function loss | Van der Kooi ALF et al. |
Hum Reprod 2017 32:193-200 |
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| Fertility preservation in children, adolescents and young adults with cancer: Quality of clinical practice guidelines and variations in recommendations | Font-Gonzalez A et al. | Cancer 2016: Cancer 2016 122(14):2216-23 https://doi.org/10.1002/cncr.30047 |
PanCareSurFup (PanCare Childhood and Adolescent Cancer Survivor Care and Follow-Up Studies) is a consortium of 16 European institutions in 11 countries, funded by the 7th Framework Programme of the EC, and carried out research studies into late effects of treatment for cancer, established guidelines for follow-up, and disseminated the results and provided training and workshops for stakeholders.
| Title | Authors | Link | |
|---|---|---|---|
| Evidence-based recommendations for the organization of long-term follow-up care for childhood and adolescent cancer survivors: a report from the PanCareSurFup Guidelines Working Group. | Michel G et al. | J Cancer Surviv. 2019 Oct;13(5):759-772. https://doi.org/10.1007/s11764-019-00795-5 |
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| Balancing the benefits and harms of thyroid cancer surveillance in survivors of Childhood, adolescent and young adult cancer: Recommendations from the international Late Effects of Childhood Cancer Guideline Harmonization Group in collaboration with the PanCareSurFup Consortium. | Clement SC et al. | Cancer Treat Rev. 2018 Feb;63:28-39. https://doi.org/10.1016/j.ctrv.2017.11.005 |
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| The PanCareSurFup consortium: research and guidelines to improve lives for survivors of childhood cancer. | yrne J et al. | Eur J Cancer. 2018 Nov;103:238-248. https://doi.org/10.1016/j.ejca.2018.08.017 |
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| Recommendations for gonadotoxicity surveillance in male childhood, adolescent, and young adult cancer survivors: a report from the International Late Effects of Childhood Cancer Guideline Harmonization Group in collaboration with the PanCareSurFup Consortium. | Skinner R et al. | Lancet Oncol. 2017 Feb;18(2):e75-e90. https://doi.org/10.1016/S1470-2045(17)30026-8 |
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| Increased risk of cardiac ischaemia in a pan-European cohort of 36 205 childhood cancer survivors: a PanCareSurFup study. | Feijen EAM et al. | Heart. 2021 Jan;107(1):33-40. https://doi.org/10.1136/heartjnl-2020-316655 |
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| The PanCareSurFup cohort of 83,333 five-year survivors of childhood cancer: a cohort from 12 European countries. | Grabow D et al. | Eur J Epidemiol. 2018 Mar;33(3):335-349. https://doi.org/10.1007/s10654-018-0370-3 |
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| Recommendations for Premature Ovarian Insufficiency Surveillance for Female Survivors of Childhood, Adolescent, and Young Adult Cancer: A Report From the International Late Effects of Childhood Cancer Guideline Harmonization Group in Collaboration With the PanCareSurFup Consortium. | van Dorp W et al. | J Clin Oncol. 2016 Oct 1;34(28):3440-50. https://doi.org/10.1200/JCO.2015.64.3288 |
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| Risk of digestive cancers in a cohort of 69 460 five-year survivors of childhood cancer in Europe: the PanCareSurFup study. | Reulen RC et al. | Gut. 2020 Nov 2:gutjnl-2020-322237. https://doi.org/10.1136/gutjnl-2020-322237 |
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| 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. | Allodji RS et al. | Eur J Cancer. 2019 Aug;117:71-83 https://doi.org/10.1016/j.ejca.2019.05.013 |
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| Late Cardiac Events after Childhood Cancer: Methodological Aspects of the Pan-European Study PanCareSurFup. | Feijen EA et al. | PLoS One. 2016 Sep 19;11(9):e0162778. https://doi.org/10.1371/journal.pone.0162778 |
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| Male breast cancer after childhood cancer: Systematic review and analyses in the PanCareSurFup cohort. | Wang Y et al. | Eur J Cancer. 2022 Apr;165:27-47. https://doi.org/10.1016/j.ejca.2022.01.001 |
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| Impact of era of diagnosis on cause-specific late mortality among 77 423 five-year European survivors of childhood and adolescent cancer: The PanCareSurFup consortium. | Byrne J et al. | Int J Cancer. 2022 Feb 1;150(3):406-419. https://doi.org/10.1002/ijc.33817 |
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| The ‘Survivorship Passport’ for childhood cancer survivors. | Haupt R et al. | Eur J Cancer. 2018 Oct;102:69-81. https://doi.org/10.1016/j.ejca.2018.07.006 |
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| The views of European clinicians on guidelines for long-term follow-up of childhood cancer survivors. | Brown MC et al. | Pediatr Blood Cancer. 2015 Feb;62(2):322-328. https://doi.org/10.1002/pbc.25310 |
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| Risk of Soft-Tissue Sarcoma Among 69 460 Five-Year Survivors of Childhood Cancer in Europe. | Bright CJ et al. | J Natl Cancer Inst. 2018 Jun 1;110(6):649-660. https://doi.org/10.1093/jnci/djx235 |
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| Risk of Subsequent Bone Cancers Among 69 460 Five-Year Survivors of Childhood and Adolescent Cancer in Europe. | Fidler MM et al. | J Natl Cancer Inst. 2018 Feb 1;110(2). https://doi.org/10.1093/jnci/djx165 |
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| The views of European clinicians on guidelines for long-term follow-up of childhood cancer survivors. | Brown MC et al. | Pediatr Blood Cancer. 2015 Feb;62(2):322-328. https://doi.org/10.1002/pbc.25310 |
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| Recommendations for Cardiomyopathy Surveillance for Survivors of Childhood Cancer: A Report from the International Late Effects of Childhood Cancer Guideline Harmonization Group. | Armenian SH et al. | Lancet Oncology 2015; 16: e123-136. https://doi.org/10.1016/s1470-2045(14)70409-7 |
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| The European Experience of Establishing Guidelines for Surveillance of the Childhood Cancer Survivor, in Handbook of Long Term Care of the Childhood Cancer Survivor. | Skinner R et al. |
In Handbook of Long-Term Care of the Childhood Cancer Survivor; Mucci, G., Torno, L., Eds.;
Springer: New York, NY, USA, 2015; pp. 25–35
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| Survivorship after childhood cancer: PanCare: A European Network to promote optimal long-term care. | Hjorth L et al. | Eur J Cancer, 2015. 51(10): 1203-1211. https://doi.org/10.1016/j.ejca.2015.04.002 |
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| Surveillance of late effects by treatment: the European experience. | Skinner R et al. | Handbook of Long Term Care of the Childhood Cancer Survivor”, ed GA Mucci. | |
| A New Method to Facilitate Valid and Consistent Grading Cardiac Events in Childhood Cancer Survivors Using Medical Records | Feijen EL et al. | PLoS One. 2014; 9(7): e100432. https://doi.org/10.1371/journal.pone.0100432 |
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| Risk of second bone sarcoma following childhood cancer: role of radiation therapy treatment. | Schwartz B et al. | Radiat Environ Biophys, 2014. 53(2): 381-90. https://doi.org/10.1007/s00411-013-0510-9 |
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| REPORT: Handbook for guideline development; collaboration between International Guideline Harmonization Group, PanCareSurFup and Cochrane Childhood Cancer Group. | Mulder RL et al. | ||
| A worldwide collaboration to harmonize guidelines for the long-term follow-up of childhood and young adult cancer survivors: a report from the International Late Effects of Childhood Cancer Guideline Harmonization Group. | Kremer LC et al. | Pediatr Blood Cancer, 2013. 60(4): 543-9. https://doi.org/10.1002/pbc.24445 |
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| Developing international consensus for late effects screening and guidance. | Skinner R et al. | Current Opinion in Supportive and Palliative Care 7(3):p 303-308, September 2013. https://doi.org/10.1097/SPC.0b013e328363a607 |
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| Health problems in survivors of childhood cancer: the need for international collaboration in long-term follow-up care | Mulder RL et al. | Future Oncol. 2013 Nov;9(11):1667-70 https://doi.org/10.2217/fon.13.107 |
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| Recommendations for breast cancer surveillance for female survivors of childhood, adolescent, and young adult cancer given chest radiation: a report from the International Late Effects of Childhood Cancer Guideline Harmonization Group | Mulder RL et al. | Lancet Oncol, 2013. 14(13): e621-9. https://doi.org/10.1016/S1470-2045(13)70303-6 |
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| Transitional care of a childhood cancer survivor to adult services, facilitating the process of individual access to different models | Frey E et al. | Curr Opin Support Palliat Care. 2013 Sep;7(3):309-13. https://doi.org/10.1097/SPC.0b013e32836484bb |
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| Cohort profile: The Swiss Childhood Cancer Survivor Study. | Kuehni CE et al. | Int J Epidemiol,2012. 41(6): 1553-1564. https://doi.org/10.1093/ije/dyr142 |
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| Total heart volume as a function of clinical and anthropometric parameters in a population of external beam radiation therapy patients | Badouna AN et al. | Phys Med Biol. 2012 Jan 21;57(2):473-84 https://doi.org/10.1088/0031-9155/57/2/473 |