Clinical practice guideline registry — retinoblastoma
Last curated: 2026-09-01
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 |
| 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superseded by → PMID 39998650 |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 |
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.
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 |
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
- 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.