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Curation log — retinoblastoma

Newest entries first. Every content-changing session appends an entry: date, what changed, what was searched, follow-ups for next time. See CLAUDE.md.

2026-10-31 — Periodic literature sweep (Codex)

Search window and sources. Publications dated 2026-10-24 through 2026-10-31 inclusive. Live PubMed E-utilities searches covered nine topic groups: epidemiology/burden; genetics/pathogenesis/counselling; diagnosis/staging; systemic/focal therapy/enucleation/pathology; local chemotherapy; extraocular/trilateral disease; survivorship/vision; access/patient experience; and guidelines/trials. Both publication-date (pdat) and entry-date (edat) searches were run for every group. Broad retinoblastoma[Title/Abstract] returned 3 publication-date and 10 entry-date records; unfielded retinoblastoma returned 5 and 12. Topic pdat counts were 0/1/3/2/0/1/1/2/0, and edat counts 5/4/7/6/1/3/3/2/1. Every topic also had a dated "Cochrane Database Syst Rev"[jour] query: all nine returned zero. An unrestricted CDSR backstop returned only the two already catalogued reviews. These are PubMed/CDSR absences. CENTRAL was not searched (Cochrane Library HTTP 403 per SOURCES.md).

Europe PMC REST was queried for every topic with (TITLE:retinoblastoma OR ABSTRACT:retinoblastoma) and FIRST_PDATE:[2026-10-24 TO 2026-10-31], plus broad and preprint searches. The broad query returned four records, including two GBD-related preprints (PPR1352651 and PPR1352631); both DOIs resolved through Crossref, but no burden numbers or causal conclusions were promoted. Crossref updated-by and PubMed publication types were checked for both added papers, without retraction or expression-of-concern flags. A final live E-utilities esummary query also resolved all 387 PMID identifiers present in the edited markdown; this checks identifier retrieval, not unchanged claim accuracy. Unpaywall was skipped because LIFEBANK_CONTACT_EMAIL is unset. SciELO and LILACS could not be searched (HTTP 403 per SOURCES.md); no absence of regional evidence is asserted.

Trials and web checks. ClinicalTrials.gov v2 individually resolved all 20 NCT IDs currently cited in the wiki, plus one historically excluded identifier in the log. All last-update and results-first-post dates precede the window. The complete query.cond=Retinoblastoma result was paged through all 140 records; none was first posted, last updated or first posted results in the window. No status or results-posting changes were found. NCT01783535 still has results first posted 2026-06-29; NCT03026998 remains ACTIVE_NOT_RECRUITING without posted results. ISRCTN's XML API (/api/query/format/default?q=retinoblastoma&limit=100) returned four records, including both Tanzania TopCAT registrations, with no update in the window. Its HTML pages redirected to a JavaScript/cookie holding page; the initially attempted JSON endpoint was 404. ChiCTR's query returned HTTP 405, so no Chinese registry update was verified. WHO ICTRP was not searched programmatically; the named ISRCTN registry supplies the non-US check.

Guideline/burden checks included targeted society-site web searches, ICMR's guidelines index, NCI PDQ and the One Rb World map. No new guideline was identified in the dated database queries. Egyptian Health Council national guidance was newly located and catalogued: its executive summary states last update 2025-08-26, so this is a coverage repair, not a new 2026 document. NCI PDQ still displays 2025-04-03; ICMR still links its historical national PDF. No newly verified population-burden estimate was added to STATISTICS.md. Patient-organisation checks retrieved WE C Hope's blog, CHECT's homepage and actual /blog/ route, Canadian Retinoblastoma Society homepage/events, and CanKids' live retinoblastoma page. The directly fetched WE C Hope blog identified a new 2026-10-26 day-one conference recap, which was read in full and added to patient-voice sources/themes for its family-support, survivor/prosthesis and research-participation material. The cached web-tool listing had omitted it; the raw listing also has an outdated Hawaii excerpt, so only the article body informed curation and no attendance figures were extracted. No additional in-window material was identified on the other checked pages. The Canadian listing's November eye-loss meetup remains date-TBD. The initially attempted rbcanada.com address timed out and the old CanKids .html path was 404; the correct source pages were subsequently retrieved.

Triage and changes. Added Wubalem 2026 (PMID 42950754) to BIBLIOGRAPHY.md only; this surgical-pathology series does not establish population burden, and its abstract numbers were not promoted. Completed the carried Williams 2026 follow-up (PMID 41727643) against full text PMC12920227. Table 1 is decisive: only one of nine patient interviewees had retinoblastoma, compared with 15 of 28 caregivers; the 19 clinicians and pooled themes span two cancers. Added a qualified line to vision-outcomes-and-patient-experience.md, its full reference, patient-voice sources/themes, and sharpened OQ-11 around child self-report, proxies and participation. The wiki page is demoted to draft pending independent review. Added the Egyptian guideline registry row and synchronized INDEX.md: 384 bibliography papers (372 wiki-cited and 12 catalogue-only), plus one previously cited publisher correction outside the bibliography; 20 wiki NCT IDs; 12 curated and 7 draft wiki pages. Every edited markdown file has last-curated: 2026-10-31 frontmatter. No deep note was warranted. Full query strings, PubMed translations/IDs, source availability, registry checks and full-text verification anchors are in the search manifest.

Validation. Passed frontmatter/date/status checks, in-session PMID retrieval, dual retraction checks for both added papers, bibliography/wiki/index counts, registry completeness and transformed-link checks using the existing public-site builder mapping. The manifest resolves to the builder’s published sweeps/2026-10-31.json path. MkDocs is not installed in the available Python environment, so no full --strict render was run. Independent review remains pending.

Held back and next sweep. Tran 2026 secondary ophthalmic-artery chemotherapy (PMID 42922212) is potentially useful, but Crossref returns 404 for its PubMed DOI in both case forms and a title search did not locate it. Its Crossref retraction check is incomplete: resolve this before adding it. The MTHFR association, columbianadin preclinical work, adult transformation case and mixed-cancer Gaza cohort did not justify wiki changes; pathway-only matches were excluded. Watch the two GBD preprints for peer review and inspect their modeled mortality/incidence assumptions before any statistics update. Rajan's vitrectomy full text remains unavailable: Europe PMC XML returned 500 and direct PMC returned a browser-check page. Berry's editorial has no abstract or PubMed companion link; publisher full text was unavailable, so its companion paper remains unresolved. Europe PMC still reports no PMCID for Fattahi/Farouk Sait and XML retrieval failed for Aubakirova. Carry the earlier Yao/Yousef/Lazaridi/Molla full-text checks, Tanzania cohort publication watch, tracked trial results and independent review of all seven draft pages forward. Compare the Egyptian recommendations with existing guidance before synthesizing them in the wiki; also review the older ARIA adapted-management and RCPath pathology documents surfaced by society-site searches. No git, publication or deployment command was run.

2026-10-24 — Periodic literature sweep (Claude, claude-opus-5-5)

Window and sources. Searched publications from 2026-10-17 to 2026-10-24. I queried PubMed E-utilities live. The broad retinoblastoma[Title/Abstract] search returned 4 records by publication date (datetype=pdat) and 8 by entry date (edat). Unfielded retinoblastoma by entry date returned 9. The same nine topic strings as the 2026-10-17 sweep were run under both date types; pdat counts were 2/2/2/1/0/0/0/2/0 and edat counts were 3/2/3/5/1/2/2/3/0. For each topic, "Cochrane Database Syst Rev"[jour] AND retinoblastoma AND (<topic>) in the window returned 0. The unrestricted CDSR query still returns only the two catalogued reviews (PMID 41700592, 28589646). That is an absence in PubMed/CDSR only. CENTRAL (cochranelibrary.com, HTTP 403) was not searched. Europe PMC REST used FIRST_PDATE:[2026-10-17 TO 2026-10-24] for a title search (3), a title search restricted to preprints (1), an abstract search (4) and the nine topic strings combined with TITLE:retinoblastoma. It surfaced one relevant no-PMID preprint (PPR1345035, doi:10.21203/rs.3.rs-11158085/v1; Crossref updated-by none), which was not cited. ClinicalTrials.gov v2 was queried for all 20 NCT IDs cited in the wiki. There were no status changes and no new results postings: NCT01783535 results remain dated 2026-06-29, and NCT03026998 is still active-not-recruiting with no results. query.cond=Retinoblastoma was paged through all 140 records. The only record updated in the window was NCT06498648, a soft-tissue-sarcoma trial matched through the RB1 pathway, and it was excluded. ISRCTN (q=retinoblastoma) returned 4 records, none updated since 2026-09-10. WHO ICTRP was not searched programmatically. SciELO/LILACS (HTTP 403) were not searched, so no regional absence is inferred. Unpaywall was skipped because LIFEBANK_CONTACT_EMAIL is unset. Guidelines: the PubMed guideline/consensus topic query returned 0 in the window, and no new society guideline was identified in PubMed or Europe PMC. No guideline body websites were re-checked this week. Statistics: no new registry or burden paper. Patient organisations: WE C Hope and the Canadian Retinoblastoma Society homepages returned HTTP 200; onerbworld.org did not respond; the CHECT news URL returned 404 (homepage 200). No new patient-organisation material was catalogued. Retraction status was checked for every added record in both the PubMed publication types and the Crossref updated-by field, and none was flagged.

Triage and edits. Nothing warranted a wiki-page edit, an OPEN-QUESTIONS change or a deep note. Three records were added to literature/BIBLIOGRAPHY.md as catalogue-only entries (cited by: none): - Rajan 2026: pars plana vitrectomy after documented regression, 9 selected eyes, 2003–2022 (PMID 42910368). - Verma 2026: TFF1 immunohistochemistry in 40 primary enucleations, with no statistically significant association (PMID 42910353). - Yuti 2026: in vitro GD2-CAR T cells secreting an anti-PD-L1 scFv (PMID 42890208).

Rajan 2026 bears on the statement in red-flags-and-safety-concerns.md that vitrectomy is avoided. That statement is about unrecognised tumours and is not contradicted. PMC13686647 currently holds only the abstract, and Europe PMC full-text returned HTTP 500, so per non-negotiable 5 nothing from it was promoted to a wiki claim. Not used: a plant RBR1 paper, a breast-cancer methylation paper, an ocular-genetics workforce paper keyed to retinitis pigmentosa, a gold-nanoparticle narrative review, a single RB1/OCA2 case report, and Berry's Ophthalmology editorial (PMID 42891668; no abstract, text not read). INDEX.md bibliography count updated to 382 (11 catalogued). No wiki page changed, so no status was demoted. Search manifest: literature/sweeps/2026-10-24.json.

Next sweep. Re-read Rajan 2026 once PMC deposits the body. If its safeguard checklist and recurrence data hold, add a qualified line to red-flags-and-safety-concerns.md and/or focal-therapy-and-brachytherapy.md. Find the article that Berry's editorial accompanies in Ophthalmology (likely a salvage-versus-enucleation outcome paper) and triage it. Watch for peer-reviewed publication of the Muhimbili/Tanzania cohort (PPR1345035: 111 children; 27.0% group D and 27.0% group E; 9.9% extraocular; 15.2% mortality), which is relevant to OQ-1/OQ-2 and the TopCAT ISRCTN records. Follow-ups carried from 2026-10-17 remain open: full texts of Fattahi 2026 and Farouk Sait 2026; Yao 2026, Yousef 2026, Lazaridi 2026, Molla 2026 and Aubakirova 2026 before promotion; NCT03026998 and NCT01783535 results; Williams 2026 stigma study (PMID 41727643); an independent audit of the six draft pages.

2026-10-17 — Periodic literature sweep (Grok, grok-4.6)

Window and sources. Searched publications dated 2026-10-10 through 2026-10-17. PubMed E-utilities esearch, esummary and efetch were queried live. The broad retinoblastoma[Title/Abstract] search with datetype=pdat mindate=2026/10/10 maxdate=2026/10/17 returned 6 records. Nine topic searches used the same date window:

  • retinoblastoma AND (incidence OR prevalence OR burden OR registry OR survival OR mortality) — 2
  • retinoblastoma AND (RB1 OR heritable OR germline OR genomics OR MYCN OR pathogenesis) — 1
  • retinoblastoma AND (diagnosis OR screening OR imaging OR staging OR classification) — 4
  • retinoblastoma AND (systemic chemotherapy OR enucleation OR laser OR cryotherapy OR brachytherapy) — 0
  • retinoblastoma AND (intra-arterial OR intravitreal OR intracameral OR topotecan OR melphalan) — 1
  • retinoblastoma AND (extraocular OR metastatic OR trilateral OR optic nerve) — 2
  • retinoblastoma AND (second cancer OR subsequent neoplasm OR survivorship OR vision OR quality of life) — 2
  • retinoblastoma AND (delay OR abandonment OR access OR disparity OR family OR patient experience) — 1
  • retinoblastoma AND (guideline OR consensus OR randomized OR clinical trial) — 0

For each of those nine topic strings, also queried PubMed with ("Cochrane Database Syst Rev"[jour] AND <topic query>) in the same date window; all nine returned 0. Unrestricted "Cochrane Database Syst Rev"[jour] AND retinoblastoma returned the two already-catalogued reviews (PMID 41700592, 28589646). This is an absence in PubMed/CDSR, not in CENTRAL. The Cochrane Library/CENTRAL was HTTP 403 and was not searched. A separate datetype=edat broad search returned 10 records (the six PDAT hits plus four newly indexed older items). Europe PMC REST searches used the nine topic strings plus TITLE:retinoblastoma and a preprint filter with FIRST_PDATE:[2026-10-10 TO 2026-10-17]. The title search returned one no-PMID preprint (PPR1340711 / DOI 10.21203/rs.3.rs-10839436/v1, cataract surgery after retinoblastoma); it was resolved through Crossref (updated-by none) and was not cited. Topic-unfielded Europe PMC queries were dominated by off-topic RB1-pathway / senescence papers. PubMed publication types and Crossref updated-by were checked for every added bibliography record; OpenAlex is_retracted was false where queried. Unpaywall was skipped because LIFEBANK_CONTACT_EMAIL was not set.

ClinicalTrials.gov v2 was queried live for each of the 19 previously cited NCT IDs and query.cond=Retinoblastoma was paged through all 140 records. No cited NCT had a status or results-posting change. NCT01783535 results remain posted (first posted 2026-06-29) with an ambiguous primary-outcome count that was not converted into an efficacy claim. ISRCTN was queried live (q=retinoblastoma, 4 records): two Tanzania TopCAT/Topcat records were catalogued (ISRCTN17864800, ISRCTN63331029). ChiCTR HTML pages returned a JavaScript cookie wall, so the named record ChiCTR-IPR-15006469 was not re-read. The WHO ICTRP portal loaded (HTTP 200) but programmatic search was not established. SciELO search returned HTTP 403; LILACS timed out. Neither regional database was searched, so no region-wide literature absence is inferred. ICMR national-guideline PDF still served (HTTP 200). WE C Hope, One Rb World, CHECT, Canadian Retinoblastoma Society and CanKids pages were re-fetched (HTTP 200). DOAJ article search returned HTTP 400.

Triage and edits. Three papers were added to wiki pages: the ERIC/EuRbG 2025 imaging practice guideline (PMID 40770140; full text PMC12953368; correction PMID 40932489 is an author-name spelling only), a two-centre plasma/CSF RB1 ctDNA series (PMID 42873577), and an observational proton-versus-photon in-field SMN comparison (PMID 42861579). Two further records were bibliography-catalogued only (Namjoshi 2026 qualitative trust study, PMID 42867058; Lin 2026 aqueous VEGF-A, PMID 42872949, newly indexed). Off-topic RB1-pathway papers, a nanoprobe review, a German IVC review without an abstract, a bone-metastasis case report, and a carbon-ion sarcoma series with one retinoblastoma primary were not used. No paper merited a landmark deep note. Wiki pages edited: clinical-presentation-and-diagnosis.md, extraocular-metastatic-and-trilateral-disease.md, molecular-pathogenesis-and-cell-of-origin.md, second-cancers-and-survivorship.md, guidelines.md, clinical-trials-landscape.md (all draft). Literature layer: BIBLIOGRAPHY.md, guidelines/REGISTRY.md, statistics/STATISTICS.md, patient-voice/sources.md, patient-voice/themes.md, OPEN-QUESTIONS.md (OQ-6, OQ-7, OQ-8, OQ-15, OQ-18 dates). INDEX.md counts updated. Search manifest written to literature/sweeps/2026-10-17.json.

Decisions. The ERIC 2025 guideline has a February 2026 issue date, so it sat outside the dated 2026-10-10 window; it was added because the guidelines check is not date-windowed and the document was missing from the registry. ISRCTN17864800 and ISRCTN63331029 share the TopCAT acronym, funder and Tanzanian centres but differ in phase, PI, dates and assigned identifiers; they are listed as two records, not merged.

Next sweep. Check full text of Fattahi 2026 and Farouk Sait 2026 (Wiley/AACR 403 here; Unpaywall skipped). Recheck Yao 2026 cT2/cT3 (PMID 42680557), Yousef 2026 1000-eye cohort (PMID 42759575), Lazaridi 2026 RB1 penetrance (PMID 42760334), Molla 2026 Africa abandonment (PMID 42578510) and Aubakirova 2026 Kazakhstan (PMID 42325541) before promoting those catalogue rows to wiki claims. Monitor ISRCTN63331029 / ISRCTN17864800 for whether they are one protocol or two, and NCT03026998 / NCT01783535 results. Williams 2026 stigma study (PMID 41727643) is a candidate for the patient-voice geographic gap (Guatemala, Jordan, Zimbabwe) but was outside this date window. Revisit SciELO/LILACS and CENTRAL through an authorized route; independently audit the draft pages.

2026-10-10 — Periodic literature sweep (Codex)

Window and sources. Searched publications dated 2026-09-01 through 2026-10-10. PubMed E-utilities esearch, esummary and efetch were queried live; the broad retinoblastoma[Title/Abstract] AND 2026/09/01:2026/10/10[dp] search returned 73 records, including off-topic RB1-pathway papers and retraction notices that were excluded. Nine topic searches each used (<topic query>) AND 2026/09/01:2026/10/10[dp], where the topic queries were:

  • retinoblastoma AND (incidence OR prevalence OR burden OR registry OR survival OR mortality)
  • retinoblastoma AND (RB1 OR heritable OR germline OR genomics OR MYCN OR pathogenesis)
  • retinoblastoma AND (diagnosis OR screening OR imaging OR staging OR classification)
  • retinoblastoma AND (systemic chemotherapy OR enucleation OR laser OR cryotherapy OR brachytherapy)
  • retinoblastoma AND (intra-arterial OR intravitreal OR intracameral OR topotecan OR melphalan)
  • retinoblastoma AND (extraocular OR metastatic OR trilateral OR optic nerve)
  • retinoblastoma AND (second cancer OR subsequent neoplasm OR survivorship OR vision OR quality of life)
  • retinoblastoma AND (delay OR abandonment OR access OR disparity OR family OR patient experience)
  • retinoblastoma AND (guideline OR consensus OR randomized OR clinical trial)

For each of those nine topic strings, also queried PubMed with ("Cochrane Database Syst Rev"[jour] AND <topic query>) AND 2026/09/01:2026/10/10[dp]; all nine returned zero records. This establishes no dated Cochrane review in PubMed, not an absence in CENTRAL. The Cochrane Library/CENTRAL was not searched. Europe PMC REST searches used (<topic query>) AND FIRST_PDATE:[2026-09-01 TO 2026-10-10] for all nine topics, plus TITLE:retinoblastoma AND FIRST_PDATE:[2026-09-01 TO 2026-10-10] (25 records) and its preprint-source filter. The title search exposed one no-PMID retinoblastoma cohort preprint (PPR1335606); it was not cited. Full text availability was checked in Europe PMC for triaged papers. The PanCareSurFup full text and its results tables were read; Europe PMC returned HTTP 500 for the Kazakhstan cohort's full-text XML, so its abstract-level results were not promoted to a wiki claim. PubMed publication types and Crossref updated-by were checked for every added bibliography record; no retraction flag was present.

ClinicalTrials.gov v2 was queried live for each of the 12 previously cited NCT IDs and query.cond=Retinoblastoma was paged through all 140 returned records, rather than stopping at 100. The original 12 had no status or results-posting change since the 2026-09-01 audit. Seven additional disease-specific studies were documented after checking their individual records; broad-search RB1-pathway studies in other tumours were excluded. The named Chinese registry ChiCTR record ChiCTR-IPR-15006469 was fetched directly (HTTP 200); the WHO ICTRP portal loaded but a programmatic search was not established, so ICTRP is not claimed as searched. The ICMR guideline page and original national-guideline PDF, AACR public guidance pages, World Eye Cancer Hope, and Childhood Eye Cancer Trust were checked. The ICMR PDF cover is dated 2010; no newer retinoblastoma-specific guideline was located in the checked PubMed/ICMR/AACR sources. WE C Hope's 2026 One Rb World public program was added as patient-organisation material without an outcome claim. SciELO search returned HTTP 403 and LILACS search endpoints timed out; neither regional database was searched, so no region-wide literature absence is inferred. Unpaywall was not queried because no contact address was supplied.

Triage and edits. Seven papers were added to literature/BIBLIOGRAPHY.md: a full-text-checked European cutaneous-melanoma survivor cohort, a full-text-checked exposure systematic review, and five abstract-level cohort/genetics/treatment records. No paper merited a landmark deep note. The melanoma cohort sharpened wiki/second-cancers-and-survivorship.md, literature/statistics/STATISTICS.md and OQ-7, with explicit caution that the nonheritable melanoma estimate rests on seven events and historical genetic classification. wiki/clinical-trials-landscape.md now records the complete trial sweep and seven previously uncatalogued disease-specific studies. The historical 2010 ICMR document was added to literature/guidelines/REGISTRY.md, and the 2026 organisation program to literature/patient-voice/sources.md. INDEX.md counts and statuses were updated. The two edited wiki pages are draft pending independent audit; no deep note or search manifest was created.

Next sweep. Check full text of the 2026 multicentre cT2/cT3 comparison, Jordanian regional cohort, adult-population RB1 penetrance study and Africa abandonment baseline before promoting quantitative claims beyond the bibliography. Review the ClinicalTrials.gov results section for NCT01783535 and monitor the seven added entries, especially NCT03026998 for surveillance results. Re-check genetically confirmed nonheritable melanoma risk and whether skin surveillance changes stage or mortality. Revisit inaccessible SciELO/LILACS and CENTRAL through an authorized route before making regional or all-registry absence claims; independently audit the two edited wiki pages.

2026-09-01 — Independent audit (Claude; author: Codex)

Audited every page in wiki/ and every artifact in literature/. All 19 pages promoted to status: curated. Roadmap status → audited.

What was checked. All 367 distinct PMIDs cited anywhere in the condition were re-fetched live from PubMed E-utilities in this session (efetch, MEDLINE format, seven batched requests). Every identifier resolved. A scripted comparison then checked 800 numbered reference lines and 1,385 inline (Author Year, PMID:) citations against the retrieved records for first author, publication year, journal (full title and abbreviation) and exact title: zero mismatches beyond diacritic rendering (Yanık Ö vs the record's ASCII Yanik O, which is the correct restoration, not an error). All 12 NCT identifiers were re-queried individually against the ClinicalTrials.gov v2 API on 2026-09-01; every one resolved and the overall status, study type and phase recorded on clinical-trials-landscape.md matched the live registry exactly, including [NCT01906814](https://clinicaltrials.gov/study/NCT01906814){target="_blank" rel="noopener"} still carrying UNKNOWN. A second script extracted every numeric token from all 214 quantitative bullets and all 145 sourced statistics rows and matched it against the abstract of the cited record; every residual flag was manually resolved (nearly all were numbers spelled out in words in the abstract, e.g. "Seventy-five eyes"). The four organization websites in the patient-voice layer were re-fetched (HTTP 200, all live), and the CanKids "56 partnering hospitals" figure was confirmed verbatim on the fetched page.

Errors found and fixed.

  1. Three off-topic records had entered by title indexing and were removed from clinical-trials-landscape.md, classification-and-staging.md and BIBLIOGRAPHY.md: PMID 33025213 (palbociclib in retinoblastoma-positive anaplastic oligodendroglioma), PMID 30151703 (palbociclib in RB1-positive glioblastoma — the word "retinoblastoma" appears nowhere in its record) and PMID 39664374 (RB1 in multiple myeloma). PMID 36603130 (Rb-pathway targeting in sarcomas) was removed from the trials page for the same reason. Reference lists were renumbered.
  2. A fourth off-topic record was relabelled rather than deleted. PMID 36982482 is a neuroblastoma cell-line study; it is now explicitly marked in the register and in the text as MYCN/RB1 mechanistic background and not as retinoblastoma evidence.
  3. Three fabricated DOIs in landmark notes. global-study-group-2022-outcomes.md carried 10.1038/s41433-021-01675-y (an Eye DOI) for a Lancet Global Health paper, schonfeld-2021-subsequent-cancers.md carried 10.1038/eye.2012.175, and ye-2024-adjuvant-cycles.md carried 10.1080/13696998.2020.1831518. All three corrected against the SO field of the live record (10.1016/S2214-109X(22)00250-9, 10.1038/s41416-020-01248-y, 10.1001/jama.2024.19981). The PMIDs and every other field on those notes were correct.
  4. Two claims rested on records with no abstract in PubMed and therefore could not be verified: the cryotherapy bullet on focal-therapy-and-brachytherapy.md (PMID 8407173, a 1993 International Ophthalmology Clinics teaching article) and the chemoreduction-consolidation bullet (PMID 16139001, a two-page 2005 AJO item). Both were replaced by quantified, verifiable statements; PMID 8407173 is retained with an explicit note that no effect size is claimed from it.
  5. One citation existed nowhere in the catalogue. PMID 34496780 (Jullien, newborn vision screening) was cited in OPEN-QUESTIONS.md but appeared in no wiki page and no bibliography entry. It now carries a claim on clinical-presentation-and-diagnosis.md and a bibliography line.
  6. Four numeric imprecisions in text written during this audit were caught by the numeric checker and corrected before promotion: an invented denominator for the melphalan seed-resolution rate (the source's own 92% is inconsistent with its stated 25-eye arm, which is now said explicitly), "eyes" written for "patients" in the retinal-detachment denominator, 9.65–171 truncated from 9.65–171.55, and 33.3% where the source says 33.33%.
  7. Wording tightened where the source did not support the strength of the claim. overview.md said "cure exceeds 99% at three years"; the source reports three-year survival of 99.5%, and the page now says so and states that survival at three years is not cure. global-access-and-outcome-disparity.md presented the "system intervals total 57%" reading of the Indian lag study without the paper's own conclusion that parental lag is the largest single contributor; both readings and the socio-economic correlates are now given.
  8. Jenkinson et al. in the guideline registry corrected to Jenkinson H. (single author).

Stale absences re-run. Four asserted or implied absences were searched live on 2026-09-01 and are now stated as dated, positive evidence-gap sentences rather than bare assertions. (a) No focal modality has been randomised against another: retinoblastoma AND (cryotherapy OR thermotherapy OR laser OR brachytherapy OR plaque) AND randomized controlled trial[pt] returned 1 record — a chemotherapy comparison — which was itself missing from the base and has been added (Lumbroso-Le Rouic 2016, PMID 26427984). (b) No society guideline governs sarcoma surveillance in survivors: the guideline/practice-guideline/consensus publication-type query returned 0 records; the unrestricted query returned only the two consensus documents already catalogued plus the 2016 proposal. (c) No clinical CDK4/6 trial exists in retinoblastoma: retinoblastoma[MeSH Major Topic] with palbociclib/ribociclib/abemaciclib/CDK4/CDK6 returned 32 records, none a clinical trial in this disease; the preclinical anchor (Yang 2026, PMID 42212883) was added. (d) No awareness intervention has been tested against a stage endpoint: the controlled-trial-restricted query returned 5 records, all treatment or imaging trials or a general cancer-awareness review.

Two randomized trials were missing from the build and have been added, both found by the absence searches above: Roy 2023 (PMID 37243382), a single-blinded randomized trial showing that higher-dose carboplatin does not improve globe or vision salvage in group D/E disease, and Lumbroso-Le Rouic 2016 (PMID 26427984). Two further records now cited: Russo 2025 (PMID 40891611, AIEOP RTB 012 long-term results) and Yang 2026 (PMID 42212883).

Density repair — the largest change. Every page met the 150–400-line target and the 25–60-citation target, but the citations were carried almost entirely by two mechanically generated tables (an "evidence register" of PMID+title rows labelled Topic-resolved source, and a "source chronology" repeating the same rows by year). The substantive quantitative content was 0–6 bullets per page; focal-therapy-and-brachytherapy.md contained no effect size, confidence interval or sample size anywhere. This is not a citation error but it is a substantive one, and a page with four numbers on it cannot honestly be called curated. Every page's Decision-relevant evidence section was rewritten to state effect sizes, confidence intervals, denominators and p-values drawn from abstracts fetched live in this session — 214 quantitative bullets; before the audit the same 19 pages carried 57 lines in total containing both a number and a citation. The register and chronology tables were left in place; their preamble now states honestly what a register row does and does not assert.

What remains flagged.

  • The audit-added bullets are single-engine content. They were written by the auditor and machine-verified against live abstracts, but no third engine has checked them. The next sweep should treat the Decision-relevant evidence sections as the material most in need of independent review.
  • Verification is abstract-level throughout. No claim in the condition depends on full text beyond the abstract of the record it cites, and where an abstract was insufficient the claim was removed rather than softened. Figures reported only in a paper's tables are therefore absent by design.
  • The Interpretation rules and per-page Open questions sections are identical boilerplate across all 19 pages. They are not false, but they carry no page-specific information and should be replaced with page-specific content in a deepen pass.
  • The ClinicalTrials.gov landscape was verified per-identifier, not re-enumerated. The build's query.cond=Retinoblastoma call was capped at 100 records; this audit confirmed all 12 cited studies individually but did not page through the full result set, so a recruiting study cited by nobody could still be missing.
  • Patient-organization coverage remains geographically incomplete (four organizations: global, UK, Canada, India), as the build recorded. Latin America, continental Europe, the Middle East, East Asia and most of Africa are unrepresented.
  • Guideline currency was checked against PubMed only. Web-only national guidance is not excluded by these searches; the registry says so and the watch list carries the retrieval routes.

Counts after audit. 19 pages, all curated, 194–219 lines each; 367 distinct PMIDs (all live-resolved twice); 12 NCT IDs; 367 bibliography entries with cited-by lists regenerated from the pages and cross-checked in both directions with zero mismatches; 145 sourced statistics rows; 5 landmark notes; 10 catalogued guideline records; 4 verified organizations; 20 open questions and 14 dots, five of which previously carried uncited assertions and now carry live-verified citations.

2026-09-01 — Full build (Codex)

Completed the full seeded-condition build. Wrote all 19 canonical wiki pages at 181–187 lines each and left every page at status: draft for independent audit. Built the literature layer: a 365-record page-cited bibliography (368 distinct PMIDs across the condition), five landmark notes, guideline registry, 90+ row statistics sheet, and four-file patient-voice layer. Replaced the seed open questions with 20 tiered questions and 14 dots-not-yet-connected junctions; rebuilt the index and changed the roadmap status to built.

Live PubMed work. Ran 58 E-utilities searches (including the batched 18-anchor PMID query) across epidemiology, global outcomes, RB1, mosaicism, testing, cone-cell origin, MYCN, genomics, presentation, imaging, ICRB/cTNMH/IRSS, systemic chemotherapy, IAC, intravitreal/intracameral therapy, focal therapy, brachytherapy, enucleation/pathology, extraocular/trilateral disease, subsequent cancers, radiotherapy, survivorship, vision, psychosocial experience, delay, abandonment, guidelines, trials and aqueous biomarkers. Batched efetch resolved 496 eligible PubMed records; all 18 seed anchors re-resolved. The final condition cites 368 of those records. A final identifier check separately resolved identifier 20301625 as a GeneReviews chapter and removed an erroneous provisional Canadian-guideline classification before handoff.

Live ClinicalTrials.gov work. Queried API v2 with query.cond=Retinoblastoma, page size 100, on 2026-09-01. The response contained 100 records. Twelve cited NCT IDs were checked against that live response. Registry states were preserved exactly; UNKNOWN was not relabeled active.

Patient-voice web work. Fetched or opened World Eye Cancer Hope, Childhood Eye Cancer Trust, Canadian Retinoblastoma Society and CanKids KidsCan retinoblastoma pages on 2026-09-01. Used only public material, paraphrased in aggregate, named no private individuals and excluded social-media/private-group content.

Border control. Re-verified Schonfeld 2021 (PMID 33473166). The SIR 11.9 (95% CI 10.4–13.5) is for any subsequent malignant neoplasm in heritable survivors and 0.8 (0.5–1.2) for non-heritable survivors. The 3.1–17 value is retained only as a range spanning melanoma, CNS, oral-cavity and breast sites. A melanoma-specific SIR of 26.78 (9.78–58.30) is quoted only from the separate Danish cohort (Gregersen 2020, PMID 33090227). Retinoblastoma and melanoma remain cross-linked, not merged.

Items for the independent auditor. Check every claim against full text where the abstract is insufficient; verify that mechanically generated evidence registers contain no title-indexing false positives that should be removed; review guideline currency against web-only national documents; confirm the ClinicalTrials.gov result was not truncated beyond the first 100 records; and re-fetch the four organization sites. All pages intentionally remain draft.

Not verified / omitted. No universal current guideline was claimed. No melanoma-specific point estimate was attributed to Schonfeld. No claim was made that awareness interventions reduce stage at population scale. No benefit was claimed for routine imaging of asymptomatic adult heritable survivors. Geographic patient-organization coverage remains incomplete.

2026-09-01 — Seeded (Claude)

Created the condition scaffold: INDEX.md with a 19-page canonical plan and an anchor table, a seed OPEN-QUESTIONS.md (7 questions, 5 dots), this log, and the empty wiki/ and literature/ layers. No wiki pages written. The condition is deliberately excluded from the public site until it has pages.

Searches run (live PubMed E-utilities, 2026-09-01). Scoping counts: retinoblastoma 26,382; retinoblastoma[MeSH Major Topic] 7,207; retinoblastoma AND (child OR pediatric) 7,538. Topic counts recorded per planned page in INDEX.md, including epidemiology 2,203, staging/classification 2,815, enucleation 1,996, metastatic 2,042, laser/cryo/thermotherapy 687, second primary 578, intra-arterial chemotherapy 543, RB1 germline/heritable 554, quality-of-life/vision 412, intravitreal 394, brachytherapy/plaque 384, low-income/abandonment 334, external beam radiotherapy 328, genetic counselling 314, leukocoria 308, chemoreduction 184, trilateral 176, MYCN 151.

Anchor records resolved live: 18, listed in INDEX.md with year, first author and journal. Retrieved abstracts and read them rather than citing from memory for PMID 35839812 (Global Retinoblastoma Outcome Study), 27189421 (Dimaras primer) and 33473166 (Schonfeld SMN cohort); every figure quoted in the INDEX.md overview comes from one of those three abstracts.

Scoping decisions made. 1. The raw record count was rejected as a sizing input. retinoblastoma returns 26,382 records, but RB1/pRB is foundational cancer-biology vocabulary and much of that literature is not about the childhood eye tumour. The MeSH-major count of 7,207 is the disease literature and the basis for a 19-page plan. The condition owns the disease, not the pathway. 2. Not density-exempt. 7,207 records support the standard 25–60 citations per page. Recorded explicitly in INDEX.md so that a later deepen pass does not mistake the condition's rarity for thin literature, and so nobody creates a .density-exempt file for it. 3. Global outcome inequity gets a dedicated page rather than a section, because in this condition income stratum is the largest single determinant of survival. 4. A quantified shared border with melanoma, seeded in the same session — heritable survivors carry significantly increased melanoma risk (SIR 11.9 for any SMN, 33.1% cumulative incidence at 50 years) while non-heritable survivors do not (SIR 0.8) (PMID 33473166). Both conditions carry the border in INDEX.md with a rule to cross-link rather than restate.

Flagged for the build pass. - Schonfeld's abstract gives 3.1–17 as a range across melanoma, CNS, oral cavity and breast — not a melanoma-specific SIR. Retrieve the paper's melanoma-specific figure or report the range as a range. Do not invent a point estimate. - No anchor was resolved for: the ICRB/IIRC group A–E primary source, current Children's Oncology Group trial series, treatment abandonment in low-income settings, visual-acuity outcomes after globe salvage, or patient-organisation material. These are live-search tasks, not inheritances. - Every anchor in the table was resolved in a scoping session, not a build session, and must be re-verified before use.

Follow-ups. Build with tools/build-condition.sh retinoblastoma; auditor must be a different engine from the writer.