schema: eds-research/monitors/v1
monitors:
  - id: pubmed-eds-latest
    label: PubMed Ehlers-Danlos latest
    kind: literature-query
    strata: [clinical]
    target: https://pubmed.ncbi.nlm.nih.gov/?term=%22ehlers-danlos%22&sort=date
    cadence_days: 14
    purpose: New peer-reviewed EDS literature across all subtypes and comorbidity domains.
    last_checked: "2026-09-16"
    active: true
  - id: pubmed-hypermobility-spectrum
    label: PubMed hypermobility spectrum latest
    kind: literature-query
    strata: [clinical]
    target: https://pubmed.ncbi.nlm.nih.gov/?term=%22hypermobility+spectrum+disorder%22&sort=date
    cadence_days: 30
    purpose: HSD literature that borders or feeds the hEDS corpus.
    last_checked: "2026-09-16"
    active: true
  - id: clinicaltrials-eds
    label: ClinicalTrials.gov EDS condition search
    kind: trial-registry
    strata: [registry]
    target: https://clinicaltrials.gov/search?cond=Ehlers-Danlos%20Syndrome
    cadence_days: 30
    purpose: New and updated interventional and observational trials in EDS.
    last_checked: "2026-09-16"
    active: true
  - id: eds-society-research-news
    label: Ehlers-Danlos Society research news
    kind: org-feed
    strata: [community, registry]
    target: https://www.ehlers-danlos.com/
    cadence_days: 14
    purpose: Registry reports, HEDGE milestones, funded-study announcements, guideline updates.
    last_checked: "2026-09-16"
    active: true
  - id: hedge-study-watch
    label: HEDGE study publication watch
    kind: registry-watch
    strata: [registry, clinical]
    target: https://www.ehlers-danlos.com/hedge-study-update/
    cadence_days: 30
    purpose: First HEDGE publications were expected late 2025 into 2026; watch for genetic-marker findings.
    last_checked: "2026-09-16"
    active: true
  - id: community-signal-scan
    label: Public community venue signal scan
    kind: venue-scan
    strata: [community]
    target: r/ehlersdanlos, r/Hypermobility, Inspire EDS and HSD public surfaces
    cadence_days: 60
    purpose: Recurring practice and comorbidity signals reported by patients; never individual posters.
    last_checked: "2026-09-16"
    active: true
  - id: preprint-rare-disease-eds
    label: Preprint servers EDS watch
    kind: preprint-watch
    strata: [gray]
    target: medRxiv and Research Square Ehlers-Danlos queries
    cadence_days: 30
    purpose: Genetics and biomarker preprints ahead of peer review (e.g., KLK15 lineage).
    last_checked: "2026-09-16"
    active: true
  - id: guideline-consortium-watch
    label: International Consortium and guideline watch
    kind: guideline-watch
    strata: [clinical, registry]
    target: The Ehlers-Danlos Society, International Consortium on EDS and HSD publications
    cadence_days: 60
    purpose: Criteria revision proposals, management guideline updates, pediatric framework follow-ups.
    last_checked: "2026-09-16"
    active: true
  - id: historical-archive-sweep
    label: Historical archive sweep
    kind: venue-scan
    strata: [historical]
    target: Google Books, HathiTrust, and archive.org searches for pre-1988 descriptions and folk management
    cadence_days: 180
    purpose: Pre-nosology case descriptions and documented folk management of joint laxity.
    active: true