{"entity":{"id":"rejuv-paed-cog-ltfu-guidelines","kind":"technology","name":"The Children's Oncology Group Long-Term Follow-Up Guidelines","aka":[],"tldr":"The most widely used rulebook in childhood cancer survivorship, and the one that made follow-up exposure-based rather than diagnosis-based: what you were given decides what you are screened for. It comes with Health Links, plain-language sheets written for the survivor rather than the doctor, and it is free to download.","summary":"Before these guidelines existed, a survivor's follow-up depended on which cancer they had had and which hospital they were at. The Children's Oncology Group Late Effects Committee, Nursing Discipline and Patient Advocacy Committee replaced that with a single organising idea: follow-up is driven by exposure. Anthracycline at a given cumulative dose triggers one schedule, cranial radiotherapy another, alkylating agents a third, regardless of what the cancer was called.\n\nThe founding paper describes them as \"risk-based, exposure-related clinical practice guidelines intended to promote earlier detection of and intervention for complications that may potentially arise as a result of treatment for pediatric malignancies\", and states that they are \"both evidence-based (utilizing established associations between therapeutic exposures and late effects to identify high-risk categories) and grounded in the collective clinical experience of experts (matching the magnitude of risk with the intensity of screening recommendations)\". That second clause is the honest one: where the evidence runs out, expert judgement fills the gap, and the guideline says so rather than pretending otherwise.\n\nTwo features are worth noting. They are \"intended for use beginning 2 or more years following the completion of cancer therapy\", and \"they are not intended to provide guidance for follow-up of the survivor's primary disease\": they are about late effects, not about recurrence. And they ship with Health Links, which the Children's Oncology Group describes as \"patient education materials designed to help childhood cancer survivors and their families understand potential long-term health effects after treatment\", so that the survivor can hold the same information as the clinician.\n\nThey are revised periodically. The Children's Oncology Group's survivorship page carries an archive listing versions 1.0 through 5.0, and in the form OnCo could read it does not state a release date for the current version. That is recorded here as a gap rather than guessed at: a reader who needs the current version should take it from the Children's Oncology Group site itself. The guidelines were originally distributed at survivorshipguidelines.org, which now redirects to the Group's own survivorship pages.\n\nHow they relate to the others. The International Guideline Harmonization Group was formed precisely because these guidelines and their Dutch, Scottish and other counterparts disagreed, and the harmonised recommendations are now folded back into national guidelines including these. In the United Kingdom the arrangements are different again and have their own record.\n\nWhat comes back, and when: this record is a process rather than a treatment. What it delivers is that somebody knows what a given survivor should be screened for, which in the largest cohort to measure it was true for a minority.","status":"standard-of-care","asOf":"2026-10-02","wikipedia":"https://en.wikipedia.org/wiki/Children's_Oncology_Group","links":[{"label":"Development of risk-based guidelines for pediatric cancer survivors: the Children's Oncology Group Long-Term Follow-Up Guidelines (JCO 2004)","url":"https://doi.org/10.1200/JCO.2004.11.032"},{"label":"Children's Oncology Group: Long-Term Follow-Up Guidelines and Health Links","url":"https://childrensoncologygroup.org/survivorship/"},{"label":"A worldwide collaboration to harmonize guidelines for the long-term follow-up of childhood and young adult cancer survivors (Pediatr Blood Cancer 2013)","url":"https://doi.org/10.1002/pbc.24445"}],"tags":["rejuvenation","survivorship","paediatric","late-effects","evidence:strong"],"related":["childrens-oncology-group","ighg","ccss","idea-acc-auto-generated-survivorship-plans"],"cancers":["childhood-cancers","all-leukemia","hodgkin-lymphoma","neuroblastoma","wilms-tumor","medulloblastoma"],"sections":["rejuvenation","supportive-care"],"technologies":["survivorship-care-plan","rejuv-paed-uk-long-term-follow-up","rejuv-paed-transition-to-adult-care","rejuv-paed-chronic-disease-burden"],"targets":[],"drugs":[],"companies":[],"institutions":[],"pathways":[],"terms":["late-effects"],"trials":[],"people":[],"bottlenecks":["b-survivorship","b-care-fragmentation","b-knowledge-diffusion"],"keyPapers":[],"journals":[],"dependsOn":[],"notes":[],"principle":"Late effects track therapeutic exposure far more closely than they track the original diagnosis, because the mechanism is dose to a tissue. Organising surveillance by exposure therefore produces a schedule that is correct for a survivor whose cancer is rare, whose protocol was unusual, or who was treated in another country, and it makes the treatment summary the operative document rather than the diagnosis code.","strengths":["Exposure-based, so correct for rare cancers and unusual protocols","Free to download, with plain-language Health Links for survivors","The most widely adopted survivorship guideline in the world"],"limitations":["Where evidence is absent the recommendations rest on expert consensus, as the guideline states","The version history page OnCo read gives no release date for the current version","Following them requires a treatment summary that many survivors do not have"]},"route":"/technologies/rejuv-paed-cog-ltfu-guidelines/","neighbours":{"company":[{"id":"childrens-oncology-group","kind":"company","name":"Children's Oncology Group (COG)","route":"/companies/childrens-oncology-group/"}],"collection":[{"id":"ighg","kind":"collection","name":"International Guideline Harmonization Group for late effects of childhood cancer","route":"/collections/ighg/"}],"trial":[{"id":"ccss","kind":"trial","name":"Childhood Cancer Survivor Study (CCSS)","route":"/trials/ccss/"}],"idea":[{"id":"idea-rejuv-exposure-record-a-machine-can-read","kind":"idea","name":"Make the treatment exposure record machine-readable, so surveillance can be computed","route":"/ideas/idea-rejuv-exposure-record-a-machine-can-read/"},{"id":"idea-acc-auto-generated-survivorship-plans","kind":"idea","name":"Survivorship care plans generated automatically from the treatment record","route":"/ideas/idea-acc-auto-generated-survivorship-plans/"}],"cancer":[{"id":"all-leukemia","kind":"cancer","name":"Acute lymphoblastic leukaemia","route":"/cancers/all-leukemia/"},{"id":"childhood-cancers","kind":"cancer","name":"Childhood cancers (all types)","route":"/cancers/childhood-cancers/"},{"id":"hodgkin-lymphoma","kind":"cancer","name":"Hodgkin lymphoma","route":"/cancers/hodgkin-lymphoma/"},{"id":"medulloblastoma","kind":"cancer","name":"Medulloblastoma","route":"/cancers/medulloblastoma/"},{"id":"neuroblastoma","kind":"cancer","name":"Neuroblastoma (paediatric)","route":"/cancers/neuroblastoma/"},{"id":"wilms-tumor","kind":"cancer","name":"Wilms tumour (nephroblastoma)","route":"/cancers/wilms-tumor/"}],"section":[{"id":"rejuvenation","kind":"section","name":"Recovery & Rejuvenation","route":"/fronts/rejuvenation/"},{"id":"supportive-care","kind":"section","name":"Supportive Care & Survivorship","route":"/fronts/supportive-care/"}],"technology":[{"id":"rejuv-paed-bone","kind":"technology","name":"Bone after childhood cancer: peak bone mass, osteonecrosis and what rebuilds","route":"/technologies/rejuv-paed-bone/"},{"id":"rejuv-paed-breast-after-chest-radiotherapy","kind":"technology","name":"Breast cancer after chest radiotherapy in childhood, and the screening that follows","route":"/technologies/rejuv-paed-breast-after-chest-radiotherapy/"},{"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-growth-and-height","kind":"technology","name":"Growth and final height after treatment in childhood, and growth hormone","route":"/technologies/rejuv-paed-growth-and-height/"},{"id":"rejuv-paed-hearing","kind":"technology","name":"Hearing after platinum and cranial radiotherapy in a developing child","route":"/technologies/rejuv-paed-hearing/"},{"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-kidneys","kind":"technology","name":"Kidneys after cisplatin, ifosfamide, radiotherapy and nephrectomy in childhood","route":"/technologies/rejuv-paed-kidneys/"},{"id":"rejuv-paed-uk-long-term-follow-up","kind":"technology","name":"Long-term follow-up in the United Kingdom: what a survivor is actually offered","route":"/technologies/rejuv-paed-uk-long-term-follow-up/"},{"id":"rejuv-paed-neurocognitive","kind":"technology","name":"Memory, attention and learning after treatment of a childhood cancer","route":"/technologies/rejuv-paed-neurocognitive/"},{"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":"survivorship-care-plan","kind":"technology","name":"Survivorship care and late-effects surveillance","route":"/technologies/survivorship-care-plan/"},{"id":"rejuv-paed-teeth-and-face","kind":"technology","name":"Teeth, jaws and facial growth after treatment in childhood","route":"/technologies/rejuv-paed-teeth-and-face/"},{"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/"},{"id":"rejuv-paed-heart","kind":"technology","name":"The heart after anthracyclines and chest radiotherapy in childhood","route":"/technologies/rejuv-paed-heart/"},{"id":"rejuv-paed-pituitary-and-puberty","kind":"technology","name":"The pituitary, puberty and the hypothalamic axis after cranial radiotherapy in childhood","route":"/technologies/rejuv-paed-pituitary-and-puberty/"}],"term":[{"id":"rejuv-history-cure-is-not-enough","kind":"term","name":"Cure is not enough: when late effects stopped being an afterthought","route":"/terms/rejuv-history-cure-is-not-enough/"},{"id":"late-effects","kind":"term","name":"Late effects and survivorship toxicity","route":"/terms/late-effects/"}],"bottleneck":[{"id":"b-care-fragmentation","kind":"bottleneck","name":"Fragmented care and guideline gaps","route":"/bottlenecks/b-care-fragmentation/"},{"id":"b-knowledge-diffusion","kind":"bottleneck","name":"Knowledge reaches practice too slowly","route":"/bottlenecks/b-knowledge-diffusion/"},{"id":"rejuv-agenda-nobody-owns-the-follow-up","kind":"bottleneck","name":"Nobody owns the follow-up once the oncology clinic lets go","route":"/bottlenecks/rejuv-agenda-nobody-owns-the-follow-up/"},{"id":"b-survivorship","kind":"bottleneck","name":"Survivorship and late effects are neglected","route":"/bottlenecks/b-survivorship/"}],"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/"}]}}