{"entity":{"id":"pancaresurfup","kind":"collection","name":"PanCareSurFup and the European survivor cohorts","aka":["PanCareSurFup","PanCare","PanCareLIFE","PanCareFollowUp"],"tldr":"Europe's answer to the American cohorts: thirteen data providers in twelve countries pooled their records to build what its own authors call the largest cohort of children with cancer to date, 83,333 five-year survivors, so that second cancers and heart disease could be counted on a continent that keeps its data in national pieces.","summary":"PanCare is a European network of professionals, survivors and families working on the late effects of childhood and adolescent cancer. PanCareSurFup, the PanCare Childhood and Adolescent Cancer Survivor Care and Follow-Up Studies consortium, was its data-pooling project. Thirteen data providers from twelve countries delivered records to a central data centre in Mainz using a single variable list, with validity and plausibility checks before analysis. In total the project collected data on 115,596 patients diagnosed with cancer between 1940 and 2011, of whom 83,333 had survived five years or more.\n\nThe outcome-specific cohorts differ in size because eligibility differs. From a cohort of 39,152 five-year survivors, 1,014 patients with at least one cardiac event were identified. For second cancers, 3,995 survivors developed at least one second cancer out of a cohort of 71,494. From the late-mortality cohort of 79,441, 9,247 died subsequently. The authors describe the achievement in their own words: \"Through the close cooperation of many European countries and the establishment of one central data collection and harmonising centre, the project succeeded in generating the largest cohort of children with cancer to date.\"\n\nThe network's other projects answer different questions. PanCareLIFE worked on fertility, ototoxicity and quality of life, and with the International Guideline Harmonization Group produced the 2021 fertility preservation guidelines for female and male patients diagnosed at 25 or younger. PanCareFollowUp built and tested a person-centred survivorship care intervention in European clinics, with a training package for the staff who deliver it, evaluated across four survivorship clinics. The network also developed the Survivorship Passport, a structured treatment summary a survivor carries with them, which exists because the commonest practical obstacle to risk-based follow-up is that nobody can find out what the person was given.\n\nThe gap Europe still has is the denominator. A 2024 scoping review of prevalence of childhood cancer survivors in Europe found twelve usable studies from 979 published between 1989 and 2022, with limited-duration prevalence between 450 and 1,240 persons per million and complete prevalence between 730 and 1,110 per million, and concluded that \"Information on prevalence of CCS in Europe is fragmented and inconsistent.\" Nobody knows accurately how many European survivors there are to plan services for.","asOf":"2026-10-02","wikipedia":"https://en.wikipedia.org/wiki/Childhood_cancer","links":[{"label":"PanCare network","url":"https://www.pancare.eu/"},{"label":"PanCareSurFup consortium","url":"https://www.pancaresurfup.eu/"},{"label":"The PanCareSurFup cohort of 83,333 five-year survivors of childhood cancer: a cohort from 12 European countries (Eur J Epidemiol 2018)","url":"https://doi.org/10.1007/s10654-018-0370-3"},{"label":"Fertility preservation for female patients with childhood, adolescent and young adult cancer: PanCareLIFE and IGHG recommendations (Lancet Oncol 2021)","url":"https://doi.org/10.1016/S1470-2045(20)30594-5"},{"label":"A multi-country evaluation of healthcare professionals' experiences with the PanCareFollowUp training package (Support Care Cancer 2026)","url":"https://doi.org/10.1007/s00520-026-10930-5"},{"label":"Prevalence of childhood cancer survivors in Europe: a scoping review (EJC Paediatric Oncology 2024)","url":"https://doi.org/10.1016/j.ejcped.2024.100155"}],"tags":["rejuvenation","survivorship","paediatric","late-effects","cohort","europe"],"related":["ccss","sjlife","bccss","ighg","rejuv-paed-second-cancers","rejuv-paed-fertility-female","rejuv-paed-fertility-male","idea-acc-aya-survivorship-passport"],"cancers":[],"sections":["rejuvenation","supportive-care"],"technologies":[],"targets":[],"drugs":[],"companies":[],"institutions":[],"pathways":[],"terms":[],"trials":[],"people":[],"bottlenecks":["b-survivorship","b-data-silos"],"keyPapers":[],"journals":[],"dependsOn":[],"notes":["The PanCareSurFup cohort counts people, not clinical examinations: it is built for incidence of mortality, second cancers and cardiac events, not for the prevalence of everyday chronic conditions."],"url":"https://www.pancare.eu/","holds":"Pooled European data on five-year survivors of childhood and adolescent cancer, assembled for the study of late mortality, second cancers and cardiac events, together with the PanCare network's guidelines, survivorship passport and follow-up care intervention.","license":"Access by application through the consortium","maintainer":"PanCare network, with the PanCareSurFup data centre in Mainz"},"route":"/collections/pancaresurfup/","neighbours":{"trial":[{"id":"ccss","kind":"trial","name":"Childhood Cancer Survivor Study (CCSS)","route":"/trials/ccss/"}],"collection":[{"id":"bccss","kind":"collection","name":"British Childhood Cancer Survivor Study (BCCSS)","route":"/collections/bccss/"},{"id":"ighg","kind":"collection","name":"International Guideline Harmonization Group for late effects of childhood cancer","route":"/collections/ighg/"},{"id":"sjlife","kind":"collection","name":"St Jude Lifetime Cohort Study (SJLIFE)","route":"/collections/sjlife/"}],"technology":[{"id":"rejuv-paed-fertility-male","kind":"technology","name":"Fertility in boys and young men treated for cancer, including testicular tissue banking","route":"/technologies/rejuv-paed-fertility-male/"},{"id":"rejuv-paed-fertility-female","kind":"technology","name":"Fertility in girls and young women treated for cancer, including ovarian tissue freezing","route":"/technologies/rejuv-paed-fertility-female/"},{"id":"rejuv-paed-chronic-disease-burden","kind":"technology","name":"How much illness childhood cancer survivors carry, and at what age","route":"/technologies/rejuv-paed-chronic-disease-burden/"},{"id":"rejuv-paed-second-cancers","kind":"technology","name":"Second cancers after childhood cancer: the risk by treatment, and why it is falling","route":"/technologies/rejuv-paed-second-cancers/"},{"id":"rejuv-paed-transition-to-adult-care","kind":"technology","name":"The handover from children's to adult services, where follow-up falls away","route":"/technologies/rejuv-paed-transition-to-adult-care/"}],"idea":[{"id":"idea-acc-aya-survivorship-passport","kind":"idea","name":"A survivorship passport app for adolescent and young adult survivors","route":"/ideas/idea-acc-aya-survivorship-passport/"}],"section":[{"id":"rejuvenation","kind":"section","name":"Recovery & Rejuvenation","route":"/fronts/rejuvenation/"},{"id":"supportive-care","kind":"section","name":"Supportive Care & Survivorship","route":"/fronts/supportive-care/"}],"bottleneck":[{"id":"b-data-silos","kind":"bottleneck","name":"Data silos","route":"/bottlenecks/b-data-silos/"},{"id":"rejuv-agenda-late-effects-are-not-counted","kind":"bottleneck","name":"Registries count diagnoses and deaths, and not what treatment left behind","route":"/bottlenecks/rejuv-agenda-late-effects-are-not-counted/"},{"id":"b-survivorship","kind":"bottleneck","name":"Survivorship and late effects are neglected","route":"/bottlenecks/b-survivorship/"}],"term":[{"id":"rejuv-history-counting-survivors","kind":"term","name":"Counting the people who live after cancer, and why the number is not a detail","route":"/terms/rejuv-history-counting-survivors/"}],"roadmap":[{"id":"rejuvenation-roadmap","kind":"roadmap","name":"Recovery and rejuvenation roadmap: cure is not enough → survivorship gets a name → the cohorts that measured the cost → exercise proven as treatment → biological ageing measured and sold → repair, if anyone funds it","route":"/roadmaps/rejuvenation-roadmap/"}]}}