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Clinical practice guideline registry — retinoblastoma¶
Last curated: 2026-10-31
Purpose. Document-level registry. Recommendation synthesis is in ../../wiki/guidelines.md. Current means newest located in the named lineage, not universal authority. Every PMID was live-resolved in this build; web resources were fetched on the access date.
Master table¶
| Body / group | Year | Region | Scope | Citation | Status |
|---|---|---|---|---|---|
| ICMR consensus group | 2024 | India | Epidemiology, diagnosis, genetics | Singh et al. PMID 38492167 | current |
| ICMR consensus group | 2024 | India | Intraocular management | Meel et al. PMID 38609685 | current |
| ICMR consensus group | 2024 | India | Extraocular management | Madan et al. PMID 38639859 | current |
| Indian Council of Medical Research | 2010 | India | National management guidance | ICMR national guideline (accessed 2026-10-10) | historical; use the scoped 2024 consensus set for current ICMR guidance |
| AACR Childhood Cancer Predisposition Workshop | 2025 | North America/international panel | Childhood hereditary predisposition and surveillance | Kamihara et al. PMID 39998650 | current; updates 2017 document |
| AACR Childhood Cancer Predisposition Workshop | 2017 | North America/international panel | Retinoblastoma/neuroblastoma predisposition | Kamihara et al. PMID 28674118 | superseded by → PMID 39998650 |
| International survivorship consensus | 2020 | International | Adults with heritable retinoblastoma | Tonorezos et al. PMID 32422154 | current located consensus |
| UK clinical review | 2015 | United Kingdom | Diagnosis and management | Jenkinson H. PMID 25940424 | review, not formal living guideline |
| International classification review | 2018 | International | Classification and staging | Fabian et al. PMID 29915461 | current background review |
| International management review | 2018 | International | Management | Fabian et al. PMID 29321667 | review, not formal guideline |
| International modern-treatment review | 2020 | International | Intraocular treatment | Ancona-Lezama et al. PMID 33120616 | review, not formal guideline |
| European Retinoblastoma Imaging Collaboration / European Retinoblastoma Group | 2025 (journal issue 2026) | Europe | Pretreatment MRI protocol, reporting checklist, CT de-recommendation | Cardoen et al. PMID 40770140; correction PMID 40932489 (author name only) | current imaging protocol in this lineage; updates ERIC 2012 |
| Egyptian Health Council | 2025 | Egypt | National diagnosis, treatment and follow-up guidance | Retinoblastoma — Executive Summary (accessed 2026-10-31; page states last update 2025-08-26) | newest located in this national lineage; newly catalogued, not a 2026 update; recommendation comparison pending |
Guideline lineages¶
ICMR 2024 three-document set¶
- Diagnosis/genetics: Singh L, et al. Epidemiology, Diagnosis and Genetics of Retinoblastoma: ICMR Consensus Guidelines. PMID 38492167.
- Intraocular disease: Meel R, et al. Management of Intraocular Retinoblastoma: ICMR Consensus Guidelines. PMID 38609685.
- Extraocular disease: Madan R, et al. Management of Extraocular Retinoblastoma: ICMR Consensus Guidelines. PMID 38639859.
- These documents should be used as a coordinated set because route selection without diagnostic/genetic and extraocular boundaries can distort their intended scope.
- Their importance is resource context: recommendations were framed for Indian practice rather than assuming universal access to ophthalmic-artery chemotherapy.
AACR childhood predisposition: 2017 → 2025¶
- Current: Kamihara J, et al. Update on Retinoblastoma Predisposition and Surveillance Recommendations for Children. 2025. PMID 39998650.
- Superseded: Kamihara J, et al. Retinoblastoma and Neuroblastoma Predisposition and Surveillance. 2017. PMID 28674118.
- The update covers identification of hereditary disease, testing strategy, intraocular surveillance, trilateral risk, subsequent neoplasms and reproductive counselling.
- Formal supersession is within the AACR workshop lineage; it does not supersede national treatment guidelines.
ERIC imaging: 2012 → 2025¶
- Current: Cardoen L, et al. Practical guidelines on imaging of retinoblastoma: a 2025 update on behalf of the European Retinoblastoma Imaging Collaboration and the European Retinoblastoma Group. Eur Radiol 2026;36:1215–1228. PMID 40770140. Full text read from PMC12953368 on 2026-10-17.
- Correction: PMID 40932489 (DOI 10.1007/s00330-025-12005-1) corrects the spelling of Paolo Galluzzi's name only; it is not a retraction.
- Produced by a structured Delphi process and aligned to AJCC TNM 8th edition.
- Operational rules verified in the full text: high-spatial-resolution contrast-enhanced MRI of orbit and brain within two weeks of diagnosis, under general anaesthesia; orbital in-plane pixel size ≤0.3 × 0.3 mm; CT no longer recommended; spinal-axis imaging mandatory when optic-nerve or meningeal-sheath extension is extensive or a midline embryonal tumour is present; follow-up MRI during eye-conserving treatment is not routine.
- Pineal rule: solid or harmoniously cystic gland within the 99% prediction interval → clinical follow-up; atypical/irregular cystic gland → at least one MRI at three months. The document still states that no standardised serial-screening protocol exists for germline RB1 carriers.
Adult heritable-survivor consensus¶
- Tonorezos ES, et al. Recommendations for Long-Term Follow-up of Adults with Heritable Retinoblastoma. 2020. PMID 32422154.
- The panel searched three databases, reviewed 139 articles and abstracted 37.
- Risk evidence was substantial, but evidence that routine imaging of asymptomatic survivors improves outcomes was not identified.
- Skin examination for melanoma and prompt assessment of head/neck symptoms were judged prudent.
- Scope is explicitly heritable adult survivors; it must not be generalized to non-heritable survivors.
Cross-document agreement¶
| Domain | Convergent boundary | Evidence anchor |
|---|---|---|
| Referral | Suspected leukocoria/intraocular mass requires urgent specialist assessment | PMIDs: 38492167, 29321667 |
| Biopsy | Routine transocular biopsy is avoided | PMIDs: 38609685, 33120616 |
| Genetics | Comprehensive germline assessment changes child and family surveillance | PMIDs: 38492167, 39998650 |
| Classification | State the system and version; ICRB, cTNMH and IRSS are not interchangeable | PMID 29915461 |
| Treatment priority | Life before eye, eye before useful vision | PMIDs: 38609685, 38639859 |
| Advanced disease | Extraocular/metastatic disease requires systemic multimodality therapy | PMID 38639859 |
| Survivorship | Heritable and non-heritable risk groups must remain separate | PMIDs: 32422154, 33473166 |
Documented disagreements and gaps¶
- Intraocular classification. ICRB/IIRC variants assign some advanced eyes differently; treatment series can appear discordant because the denominator moved (Fabian 2018, PMID 29915461).
- Group E criteria. Enucleation thresholds and the weight assigned to neovascular glaucoma, anterior disease and tumour volume vary across centres (Kurian 2025, PMID 39922380; Singh 2024, PMID 38830602).
- First-line chemotherapy route. Randomized evidence favors IAC for progression-free globe salvage in selected unilateral group D/E disease, but infrastructure, vascular toxicity and bilateral disease limit universal translation (Wen 2023, PMID 37536351).
- High-risk pathology. Massive choroidal invasion, postlaminar optic-nerve invasion and combinations are not weighted uniformly; international survey evidence documents variation (Kaliki 2022, PMID 34762098).
- Adjuvant duration. Three CEV cycles were noninferior to six in one defined randomized population; guidelines predating 2024 cannot incorporate the result (Ye 2024, PMID 39432296).
- Serial MRI for trilateral disease. Modeling supports timed additional scans, while prospective yield data argue against follow-up of uncomplicated pineal cysts (de Jong 2022, PMID 33939299; de Bloeme 2024, PMID 38992673).
- Adult SMN surveillance. Risk is clear; mortality benefit from routine imaging is not (Tonorezos 2020, PMID 32422154).
- Resource stratification. High-technology globe salvage can widen inequity if it diverts capacity from diagnosis, enucleation, systemic therapy and completion support (Global Retinoblastoma Study Group 2022, PMID 35839812).
- Useful vision. Most guidance uses globe salvage, not standardized binocular function, as the conservative-treatment endpoint.
- Patient involvement. Reporting of survivor/parent participation in guideline panels is inconsistent.
Supersession map¶
| Lineage | Chain | Use rule |
|---|---|---|
| AACR predisposition | 2017 PMID 28674118 → 2025 PMID 39998650 | use 2025 for current childhood surveillance |
| ICMR | 2024 diagnosis/genetics + intraocular + extraocular set | use together; none supersedes another scope |
| Adult survivorship | 2020 PMID 32422154 | current located consensus; monitor updates |
| ERIC imaging | 2012 → 2025 PMID 40770140 | use 2025 for pretreatment MRI protocol; CT not recommended |
Watch list¶
| Item | Why it matters | Retrieval route |
|---|---|---|
| AJCC 9th-edition retinoblastoma staging | could change cTNMH categories | AJCC/UICC sites; PubMed retinoblastoma TNM |
| ICMR corrigenda/updates | three-document set is recent | PubMed titles and ICMR site |
| AACR surveillance updates | imaging and SMN evidence evolves | AACR workshop publications |
| COG protocol guidance | trials may alter adjuvant/extraocular practice | COG publications and ClinicalTrials.gov |
| Serial MRI consensus | current evidence points in different directions | PubMed trilateral retinoblastoma screening MRI |
| IAC implementation standards | arterial safety depends on team/procedure | ocular oncology and interventional societies |
| Intracameral guidance | evidence is pilot-scale | PubMed intracameral retinoblastoma |
| Adult survivor surveillance trials | present recommendations lack benefit evidence | PubMed and NCT03932786 |
| Multilingual national guidance | registry is English/PubMed-heavy | ministry and national-society sites |
Curation limitations¶
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The 2026-10-31 check covered dated PubMed/CDSR and Europe PMC topic searches, the ICMR guidelines index, NCI PDQ, and targeted society-site web searches. No new guideline was identified in the dated database searches. The Egyptian Health Council HTML executive summary was retrieved directly and newly catalogued; its displayed update date is 2025-08-26. NCI — “Retinoblastoma Treatment (PDQ)” still displays 2025-04-03, and the ICMR — “Guidelines” index still links the historical national PDF (both accessed 2026-10-31). This does not establish worldwide guideline currency.
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The 2026-10-17 currency check queried dated PubMed guideline/practice-guideline records (
retinoblastoma AND (guideline[pt] OR practice guideline[pt]) AND 2026[dp]), the ICMR PDF, and the AACR public site (the latter HTTP 403). The ERIC/EuRbG 2025 imaging guideline (PMID 40770140) was not in the dated 2026-10-10 window because it carries a February 2026 issue date; it is now catalogued. The ICMR site still serves the 2010 national guideline PDF (HTTP 200, 2026-10-17). This is a source-bounded check, not a global absence claim. -
PubMed establishes indexed document identity; it does not prove that no newer web-only national guidance exists.
- Several review articles are retained because retinoblastoma lacks one globally controlling guideline; they are labeled reviews, not promoted to formal guidance.
- Recommendation-level implementation requires the full document, local resources and patient context.
- Web presence was checked only for the explicitly listed Canadian organization; broader organization verification is in the patient-voice layer.