# International Guideline Harmonization Group for late effects of childhood cancer

Source: https://onco.cc/collections/ighg/  
OnCo record `ighg` (Collection). Data CC BY-NC 4.0, attribute "Data from OnCo (onco.cc)"; commercial use needs a licence.

## TL;DR

Three countries wrote three different sets of follow-up rules for the same survivors, and the rules disagreed about who to screen, how and how often. Since 2010 this group has been settling those disagreements one organ at a time, in public, with the evidence graded and the disagreement named.

## Summary

The problem the group was formed to solve is stated in each of its papers: surveillance recommendations "vary considerably" between the existing long-term follow-up guidelines, which "impedes the implementation of screening". A survivor of the same treatment could be told to have a yearly echocardiogram in one country, one every five years in another, and nothing in a third. The International Late Effects of Childhood Cancer Guideline Harmonization Group was initiated in 2010 with the aim of establishing "a common vision and integrated strategy for the surveillance of late effects in childhood and young adult cancer survivors".

The method is consistent across topics: an international multidisciplinary panel, a systematic review of the evidence for the late effect and for the surveillance test, grading of each recommendation by the strength of the underlying evidence and the potential benefit from early detection, and transparent reporting of where the panel had to rely on consensus. Panels have run from 25 to 33 experts across as many as ten countries, often jointly with PanCare.

The published topics include cardiomyopathy surveillance (2015), breast cancer surveillance after chest radiation (2013), premature ovarian insufficiency (2016), male gonadotoxicity (2017), thyroid cancer (2018), ototoxicity (2019) and fertility preservation for female and male patients (2021), alongside recommendations on bone mineral density, central nervous system neoplasms, coronary artery disease, dexrazoxane cardioprotection, education and employment, fatigue, hepatic toxicity, hypothalamic-pituitary dysfunction, mental health, metabolic syndrome, nephrotoxicity, obstetric care and pulmonary dysfunction, and anthracycline dose equivalence ratios. The group's site also lists topics still in development, among them colorectal cancer, dyslipidaemia, growth hormone treatment, neurocognitive problems, osteonecrosis, overweight and obesity, splenic dysfunction, thyroid dysfunction and underweight.

Two honest features are worth a reader's attention. The guidelines frequently conclude that the evidence is thin: the male gonadotoxicity paper states that the recommendations "reveal the paucity of high-quality evidence, highlighting the need for further targeted research". And where two screening strategies are equally unproven, the group says so rather than choosing: for thyroid cancer, "Of the two available surveillance strategies, thyroid ultrasound and neck palpation, neither was shown to be superior", so the panel produced a decision aid for a shared decision rather than a recommendation to screen.

## Fields

- Kind: Collection
- Last checked: 2026-10-02
- Also known as: IGHG; International Late Effects of Childhood Cancer Guideline Harmonization Group
- Tags: rejuvenation; survivorship; paediatric; late-effects; guideline
- URL: https://www.ighg.org/guidelines/
- Holds: Harmonised, evidence-graded surveillance recommendations for the late effects of childhood, adolescent and young adult cancer, each developed by an international multidisciplinary panel.
- Licence: Published in the peer-reviewed literature; summaries free on the group's site

## Notes

- The group harmonises surveillance, not treatment. What to do about a late effect once found is left to the relevant specialty.

## Sources

- Wikipedia: https://en.wikipedia.org/wiki/Late_effect
- International Guideline Harmonization Group: published and in-development guidelines: https://www.ighg.org/guidelines/
- A worldwide collaboration to harmonize guidelines for the long-term follow-up of childhood and young adult cancer survivors (Pediatr Blood Cancer 2013): https://doi.org/10.1002/pbc.24445
- Recommendations for cardiomyopathy surveillance for survivors of childhood cancer (IGHG) (Lancet Oncol 2015): https://doi.org/10.1016/S1470-2045(14)70409-7
- Recommendations for breast cancer surveillance for female survivors given chest radiation (IGHG) (Lancet Oncol 2013): https://doi.org/10.1016/S1470-2045(13)70303-6
- Recommendations for ototoxicity surveillance for childhood, adolescent and young adult cancer survivors (IGHG with PanCare) (Lancet Oncol 2019): https://doi.org/10.1016/S1470-2045(18)30858-1
- Recommendations for gonadotoxicity surveillance in male childhood, adolescent and young adult cancer survivors (IGHG with PanCareSurFup) (Lancet Oncol 2017): https://doi.org/10.1016/S1470-2045(17)30026-8
- Balancing the benefits and harms of thyroid cancer surveillance in survivors of childhood, adolescent and young adult cancer (IGHG with PanCareSurFup) (Cancer Treat Rev 2018): https://doi.org/10.1016/j.ctrv.2017.11.005

## Connected records

- technologies: [Bone after childhood cancer: peak bone mass, osteonecrosis and what rebuilds](https://onco.cc/technologies/rejuv-paed-bone/), [Breast cancer after chest radiotherapy in childhood, and the screening that follows](https://onco.cc/technologies/rejuv-paed-breast-after-chest-radiotherapy/), [Education, work and the years that were interrupted](https://onco.cc/technologies/rejuv-ayac-education-and-work/), [Fertility in boys and young men treated for cancer, including testicular tissue banking](https://onco.cc/technologies/rejuv-paed-fertility-male/), [Fertility in girls and young women treated for cancer, including ovarian tissue freezing](https://onco.cc/technologies/rejuv-paed-fertility-female/), [Growth and final height after treatment in childhood, and growth hormone](https://onco.cc/technologies/rejuv-paed-growth-and-height/), [Hearing after platinum and cranial radiotherapy in a developing child](https://onco.cc/technologies/rejuv-paed-hearing/), [Kidneys after cisplatin, ifosfamide, radiotherapy and nephrectomy in childhood](https://onco.cc/technologies/rejuv-paed-kidneys/), [Long-term follow-up in the United Kingdom: what a survivor is actually offered](https://onco.cc/technologies/rejuv-paed-uk-long-term-follow-up/), [Memory, attention and learning after treatment of a childhood cancer](https://onco.cc/technologies/rejuv-paed-neurocognitive/), [Second cancers after childhood cancer: the risk by treatment, and why it is falling](https://onco.cc/technologies/rejuv-paed-second-cancers/), [Survivorship care and late-effects surveillance](https://onco.cc/technologies/survivorship-care-plan/), [The Children's Oncology Group Long-Term Follow-Up Guidelines](https://onco.cc/technologies/rejuv-paed-cog-ltfu-guidelines/), [The heart after anthracyclines and chest radiotherapy in childhood](https://onco.cc/technologies/rejuv-paed-heart/), [The pituitary, puberty and the hypothalamic axis after cranial radiotherapy in childhood](https://onco.cc/technologies/rejuv-paed-pituitary-and-puberty/)
- collections: [PanCareSurFup and the European survivor cohorts](https://onco.cc/collections/pancaresurfup/)
- fronts: [Recovery & Rejuvenation](https://onco.cc/fronts/rejuvenation/), [Supportive Care & Survivorship](https://onco.cc/fronts/supportive-care/)
- bottlenecks: [Fragmented care and guideline gaps](https://onco.cc/bottlenecks/b-care-fragmentation/), [Knowledge reaches practice too slowly](https://onco.cc/bottlenecks/b-knowledge-diffusion/), [Registries count diagnoses and deaths, and not what treatment left behind](https://onco.cc/bottlenecks/rejuv-agenda-late-effects-are-not-counted/), [Survivorship and late effects are neglected](https://onco.cc/bottlenecks/b-survivorship/), [The field cannot pool its own studies, because it has not agreed what to measure](https://onco.cc/bottlenecks/rejuv-agenda-no-agreed-outcome-measures/)
- terms: [Cure is not enough: when late effects stopped being an afterthought](https://onco.cc/terms/rejuv-history-cure-is-not-enough/)
- roadmaps: [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](https://onco.cc/roadmaps/rejuvenation-roadmap/)
- ideas: [Agree what to measure, so the next systematic review can pool rather than narrate](https://onco.cc/ideas/idea-rejuv-core-outcome-set-for-late-effects/), [Make the treatment exposure record machine-readable, so surveillance can be computed](https://onco.cc/ideas/idea-rejuv-exposure-record-a-machine-can-read/)

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