schema: eds-research/runs/v1 runs: - id: run-2026-09-16-bootstrap date: "2026-09-16" scope: Initial corpus bootstrap across all five strata strata: [clinical, community, historical, registry, gray] monitors_used: - pubmed-eds-latest - clinicaltrials-eds - eds-society-research-news - hedge-study-watch - community-signal-scan - preprint-rare-disease-eds - guideline-consortium-watch - historical-archive-sweep notes: Seeded the classification, genetics, diagnostic-journey, management, community, historiography, and folk-practice categories with primary-linked records. Lidocaine resistance admitted as the reference convergent record; KLK15 admitted as emerging pending HEDGE replication. - id: run-2026-09-23-corrections date: "2026-09-23" scope: Citation, evidence-label, and number corrections after resolving every cited DOI and PMID strata: [clinical, community, historical, registry, gray] admitted_source_ids: - source-0bcf3a495f5d5a3f3899 - source-1dfb4ae3ff5aafdd0577 - source-99c47d7654307a3505da - source-9a67b455782a95159bd9 - source-d7ba05272083315d9e1f - source-ed80c4098795181b156a - source-fd495bad5265f19454c2 corrections: - target: source-aef7c864eb540644a26f change: Replaced by source-99c47d7654307a3505da. The link pointed to PMID 15684371 ("Appendicitis after appendicectomy"); the Hakim et al. letter is PMID 15684369. Tier cohort-study changed to cross-sectional-study. evidence: PubMed E-utilities records for PMIDs 15684371 and 15684369; Schubart et al. 2019 (PMC6834718) describes the Hakim data as a survey. - target: source-8cddcecd9d7a698123e5 change: Replaced by source-0bcf3a495f5d5a3f3899. PMID 4259630 is a 1972 cartilage paper (Bjelle et al.); Beighton, Solomon, and Soskolne 1973 is PMID 4751776. Tier cohort-study changed to cross-sectional-study. evidence: PubMed E-utilities records for PMIDs 4259630 and 4751776. - target: source-328501b217c2b3d0d2d2 change: Title corrected. DOI 10.1002/ajmg.c.31545 is Engelbert et al.'s physical therapy paper, not Chopra et al.'s pain paper. The ID is unchanged because the URL and date are unchanged. evidence: Crossref record for 10.1002/ajmg.c.31545. - target: source-d7ba05272083315d9e1f change: Added Chopra et al., Pain management in the Ehlers-Danlos syndromes (10.1002/ajmg.c.31554), now cited by mgmt-pain-management-2017. evidence: Crossref record for 10.1002/ajmg.c.31554; PubMed 28186390. - target: source-5a8d9db9800230d918cf change: Replaced by source-1dfb4ae3ff5aafdd0577. https://www.ehlers-danlos.com/registry/ returns 404; the DICE registry page is /eds-global-registry/. The venue-dice-registry URL was updated to match. evidence: HTTP status checks on 2026-09-23. - target: source-d91980e8e90850a3f3b9 change: Replaced by source-ed80c4098795181b156a. Publication date 2025 changed to 2026-03. Note restated from the abstract; "confirming decades of patient reports" removed. evidence: Crossref (published online 2026-03-03); Europe PMC, PMID 41775498. - target: source-d4a910b62f451448889e change: Replaced by source-9a67b455782a95159bd9. Publication year 2024 changed to 2023 and publisher PMC to Genetics in Medicine Open. Note restated from the abstract. evidence: Crossref record for 10.1016/j.gimo.2023.100812; Europe PMC abstract. - target: source-3dd9471fb00916c6141b change: Replaced by source-fd495bad5265f19454c2. Publication year 1979 changed to 1978; publisher PubMed changed to The Journal of Rheumatology. evidence: PubMed record 372526 (J Rheumatol, 1978 Fall). - target: source-21337422dde3976b584c change: Tier cohort-study changed to qualitative-study; publisher BMJ changed to BMJ Connections Clinical Genetics and Genomics. evidence: Crossref record and abstract for 10.1136/bmjccgg-2025-000044. - target: source-27684d4afee8b83b9d25, source-8d222b21a7423563aba4, source-de164233cddfefc4105a change: Tier cohort-study changed to cross-sectional-study for these three surveys. Notes restated from the papers. The German 22-year figure is the overall median (mean 22.9 years); the hEDS/HSD median is 23.0 years. The paper's abstract calls these medians means; its Table 2 and discussion give them as medians with interquartile ranges. The Australian 10 to 12 years is a support-group estimate quoted in the paper's introduction. evidence: Europe PMC abstracts and full texts PMC6834718, PMC11271888, and PMC12358066 (Table 2). - target: source-fa671c0df94cd9c20ecb, source-be972ed50decef4cbf0b change: Publishers corrected from PubMed and NCBI Bookshelf to the Journal of the American Association of Nurse Practitioners and the National Academies Press (chapter 4 of the 2022 report). evidence: Europe PMC record for PMID 34739411; NCBI Books record for NBK584966. - target: public/research/sources.yml, public/research/venues.yml change: Removed unsourced claims that Inspire, r/ehlersdanlos, and The Ehlers-Danlos Society are the largest of their kind, and the unverified member count for r/ehlersdanlos. - target: mgmt-pt-mainstay change: Tier for source-328501b217c2b3d0d2d2 changed from consensus-statement to its catalog tier, expert-review. Status established changed to probable, since no remaining attestation meets the established rule. - target: mgmt-pain-management-2017 change: Now cites the Chopra paper instead of the physical therapy paper. Summary restated from the Chopra abstract; the claims about opioid caution, psychological support, and being the reference for pain care were removed because the abstract does not support them. evidence: PubMed 28186390 abstract. - target: mgmt-lidocaine-resistance change: Trial date changed to 2026-03. Survey tiers changed to cross-sectional-study. Summary restated from the papers, and "for decades" removed. The risk note now attributes its advice to the trial authors. evidence: Europe PMC abstracts for PMIDs 41775498 and 31723666; Hakim et al. 2005 letter, full text PMC1079398 (172 women with JHS, 53 age-matched controls). - target: px-trauma-informed-2025 change: Tier changed to qualitative-study and status established to probable. Journal named correctly. The sample size (n=9) and the quoted phrase could not be confirmed from the abstract and were removed. evidence: Crossref abstract for 10.1136/bmjccgg-2025-000044. - target: px-german-cohort-manifestations change: n=105 and "diagnosed 2021 to 2024" corrected to 99 respondents (80 with hEDS or HSD) at the Cologne clinic, surveyed December 2021 to May 2023. Symptoms restated from the full text. Tier changed to cross-sectional-study and status established to probable. evidence: Europe PMC abstract and full text PMC12358066. - target: px-diagnostic-odyssey-2021 change: Summary restated from the sources with each population named. "22-year median for hEDS/HSD" corrected to a median of 23.0 years for hEDS/HSD (22.0 is the median for all respondents); the Australian 10 to 12 year figure removed as a support-group estimate. evidence: Europe PMC abstracts for PMID 34739411, PMC11271888, and PMC12358066. - target: com-misdiagnosis-load change: Date 2024 changed to 2023. Status established changed to probable after the qualitative source was relabeled. evidence: Crossref record for 10.1016/j.gimo.2023.100812. - target: com-trifecta-pattern, com-cci-tethered-cord change: Removed unsourced claims that patient communities named the triad before clinical reviews and that surgical case series support CCI and tethered-cord claims. Registry wording matched to the survey. evidence: Europe PMC abstract, PMC11613559. - target: hist-van-meekren-1682, hist-ehlers-1901, hist-danlos-1908, hist-early-circus-performers, folk-performer-training change: Attestations of the 2008 Parapia and Jackson review changed from primary-historical-document or contemporaneous-clinical-account to its catalog tier, retrospective-account. - target: hist-van-meekren-1682 change: Removed the citation of Denko's 1978 translation, which translates Chernogubov's 1892 reports and is not a primary document for the 1682 case. evidence: PubMed record 372526. - target: signal-subluxation-load change: Attestation of the Ben's Friends venue changed from patient-org-synthesis to its catalog tier, single-venue-pattern. - target: hist-sack-1936-dysvascularis, hist-barabas-1967-vascular change: Removed the attestation of the National Academies chapter, which does not mention Sack or Barabas, and with it the convergent label. evidence: National Academies Press, Selected Heritable Disorders of Connective Tissue and Disability (2022), chapter 4 text. - target: hist-named-ehlers-danlos-1949 change: Marked refuted. The National Academies chapter it cites credits Johnson and Falls (1949) with the first report of autosomal-dominant inheritance and cites Ronchese's 1936 paper on "the so-called Ehlers-Danlos syndrome", so the name was in use before 1949. evidence: National Academies Press (2022), chapter 4 history section and references. - target: hist-danlos-1908 change: Removed the claim that Danlos's own case was likely pseudoxanthoma elasticum; neither cited source supports it. evidence: National Academies Press (2022), chapter 4 history section. - target: hist-berlin-1988 change: Marked contested. The record says the 1988 nosology had eleven types; the National Academies chapter it cites says nine. Not resolved in this run. evidence: National Academies Press (2022), chapter 4 history section. - target: gen-klk15-first-candidate, hist-klk15-2025, gen-hedge-study, hist-chernogubov-1892, hist-ehlers-1901, hist-danlos-1908, hist-international-2017, class-heds-2017-criteria change: Corroboration convergent changed to single-origin. In each record the strata restate one study, one program's own pages, one classification, or one historical report, so they do not corroborate each other. - target: gen-klk15-first-candidate, hist-klk15-2025, subtypes.yml heds, questions.yml heds-molecular-basis change: Removed claims that KLK15 is the first gene associated with hEDS; neither the paper nor the society's summary says so. KLK15 is described as a candidate gene. evidence: iScience abstract (PMC12424230); Ehlers-Danlos Society Norris Lab update, June 2024. - target: hist-beighton-score-1973 change: Source tier changed to cross-sectional-study. Added the 2017 classification as the source for the use of the Beighton score in the hEDS criteria. - target: cross-stratum-convergences change: Removed hist-early-circus-performers, which cites one stratum and carries no corroboration. - target: subtypes.yml hsd change: Prevalence no longer says HSD is more common than hEDS by definition; it gives the 2019 Wales figure for EDS and joint hypermobility syndrome combined. evidence: Demmler et al. 2019 abstract (194.2 per 100,000). - target: prog-dice-registry change: Replaced the claim that the registry is a recruitment rail for HEDGE with what the 2023 survey paper reports, that its respondents were registry members also enrolled in HEDGE. evidence: Halverson et al. 2023, Materials and Methods (PMC11613559). - target: questions.yml diagnostic-delay-reduction change: The claim that delays of 10 to 22 years are documented across cohorts was replaced with the registry survey's average and the German clinic's median, with their populations. evidence: Europe PMC abstracts for PMC11613559 and PMC12358066. - target: com-multisystem-2017 change: Removed the claim that systemic manifestations such as digestive, autonomic, and fatigue problems entered the 2017 hEDS criteria, and the unsourced claim that the criteria codified patient reports. The criteria's systemic features (Feature A) are connective-tissue signs; chronic musculoskeletal pain counts under Feature C. Added the Chopra pain review as a source for the companion-paper sentence. evidence: The Ehlers-Danlos Society's 2017 hEDS diagnostic checklist (Criterion 2, Features A and C); Tinkle et al. 2017 abstract, PubMed 28145611. - target: px-fatigue-underrecognized change: Removed the unsourced claims that fatigue was systematically underweighted and that the 2017 criteria restored it to the clinical picture. The summary now gives the German survey figure for fatigue. evidence: PMC12358066, results on burden of disease. - target: gen-hedge-study change: The claim that HEDGE is the largest dedicated hEDS genetics effort was removed as unsourced; the society's October 2025 timeline is quoted with its caveat that timelines may shift. evidence: The Ehlers-Danlos Society, HEDGE Study Update, published 2025-10-28. - target: public/research/publication-policy.yml change: Policy rule texts restated in plain words. The corroboration rule now names single-origin, the state added in this run; the ledger rule now says a wrong record is marked refuted rather than silently rewritten. - target: gen-collagen-and-pathway-map change: Gene groups rebuilt from the 2017 classification's pathogenetic scheme. The record had placed PLOD1 under collagen processing, COL12A1 under collagen structure, and TNXB, FKBP14, SLC39A13, ZNF469, and PRDM5 under a "signaling" group the classification does not have. evidence: Malfait et al. 2017, Table II (groups A to F and unresolved forms). - target: dx-heds-remains-clinical change: The society's position is quoted as it states it (further studies are needed to replicate the finding), rather than as a condition for ending clinical diagnosis. evidence: The Ehlers-Danlos Society, Norris Lab update, June 2024. - target: 23 records in the corpus change: Added a page description to each record whose first summary sentence is longer than 160 characters, restating facts already in the record. - target: all corpus files, collections.yml, questions.yml, venues.yml change: Titles, summaries, notes, and category descriptions edited for plain language without changing their claims. Em dashes, title epithets, and clauses describing how the index files a record were removed. Claims that changed are listed in the entries above. notes: Every DOI and PMID in the source catalog was resolved against PubMed, Crossref, and Europe PMC on 2026-09-23, and the resolved title, venue, and year were compared with the catalog entry. Record IDs are unchanged; corrected source IDs are re-derived from their URLs and dates. Drafted by an AI agent (Claude Code) during the 2026-09-23 editorial pass; no independent human review is recorded. - id: run-2026-09-25-copy date: "2026-09-25" scope: Plain-language wording on public pages and in the collections catalog strata: [clinical, registry] corrections: - target: diagnostic-odyssey-evidence change: Collection description now says "clinical and registry evidence" instead of "clinical and registry strata", keeping the internal word off the public page. evidence: The site's style guide keeps internal vocabulary out of public copy. notes: Copy-only correction. No record, source, tier, or citation changed. - id: run-2026-09-28-seo date: "2026-09-28" scope: Subtype wording and one record page description, checked against the sources each subtype already lists strata: [clinical, historical] corrections: - target: hist-barabas-1967-vascular change: Added a page description. The first summary sentence is longer than 160 characters, and the page description had been cut to "A. P." at the initials. The description restates facts already in the record. evidence: The record's own summary and cited source; no new claim. - target: subtypes.yml veds change: Summary rewritten in plain words. It names the organs the 2017 classification lists for rupture (arteries, bowel, uterus) and drops the phrase "celiprolol debate", which the page did not explain or cite. evidence: Malfait et al. 2017 (doi 10.1002/ajmg.c.31552), vEDS major criteria. - target: subtypes.yml veds change: Prevalence changed from "Estimated around 1 in 50,000 to 1 in 200,000" to "Rare". Neither listed source states that range. The National Academies EDS chapter (NBK584966) gives 1 in 50,000 while citing another work, and The Ehlers-Danlos Society's EDS types page gives no figure. evidence: National Academies Press (2022), Selected Heritable Disorders of Connective Tissue and Disability, chapter 4 prevalence section, read on 2026-09-28; ehlers-danlos.com/eds-types/ read on 2026-09-28. - target: subtypes.yml heds change: Prevalence now gives the 2019 Wales figure with its value and population (194.2 per 100,000 in 2016/2017, EDS and joint hypermobility syndrome combined) and drops the "older textbook figures near 1 in 5,000", which no listed source reports as a result. evidence: Demmler et al. 2019, BMJ Open, doi 10.1136/bmjopen-2019-031365, PubMed 31685485 abstract, results (6,021 people; diagnosed point prevalence 194.2 per 100,000 in 2016/2017), checked on 2026-09-28. notes: Wording and data corrections only. No record ID, source, tier, or citation changed. Drafted by an AI agent (Claude Code) during the 2026-09-28 search and copy pass; no independent human review is recorded.