Research program
The index is a running research program: declared monitors feed intake, intake is logged in an append-only ledger, and open questions track what the evidence has not settled.
Open questions
What the index is watching. Each names the strata it seeks evidence from.
What is the molecular basis of hEDS, and how genetically heterogeneous is it?
watchingKLK15 is the first associated gene but explains only a fraction of families; HEDGE (n=1,000) publications are expected to clarify. hEDS remains a clinical diagnosis.
Should the hEDS/HSD boundary be maintained, and how would a molecular marker change it?
openHSD was defined as a residual category in 2017; patients excluded by strict hEDS criteria may share the same biology. The criteria review study is active.
What is the true prevalence of hEDS/HSD, and how much does underdiagnosis distort it?
openTextbook figures (1 in 5,000) conflict with diagnosed-prevalence data (about 1 in 500 in Wales) and community estimates are higher still. Ascertainment bias runs in both directions.
Is the hEDS-POTS-MCAS clustering a shared mechanism or a referral artifact?
watchingThe triad is community-observed and registry-supported, but mechanism evidence is thin and diagnostic criteria for each leg differ in rigor.
Which exercise and physiotherapy modalities measurably help hEDS/HSD, and at what dose?
openPT is the mainstay recommendation but trials are small and heterogeneous; community practice runs ahead of the trial record.
What mechanism explains reduced local-anesthetic effectiveness in EDS?
watchingThe phenomenon is now trial-confirmed but the mechanism is unexplained; hypotheses range from tissue diffusion to sodium-channel and connective-tissue effects.
How should craniocervical instability and tethered-cord claims in hEDS be weighed?
watchingStrong community and some surgical-literature attention, limited controlled evidence, and meaningful surgical risk make this the sharpest contested area.
Which interventions actually shorten the EDS diagnostic odyssey?
openDelays of 10-22 years are documented across cohorts; clinician-education programs exist (EDS ECHO) but effectiveness evidence is early.
Collections
Cross-stratum convergences
Records where independent strata agree — the pattern this index exists to surface.
The hEDS genetics frontier
The search for hEDS molecular markers, from unknown status to KLK15 and HEDGE.
The diagnostic odyssey
Quantified delay, misdiagnosis, and dismissal across clinical and registry strata.
Discovery monitors
Declared, bounded inputs on fixed cadences — what the program watches and why.
PubMed Ehlers-Danlos latest
activeNew peer-reviewed EDS literature across all subtypes and comorbidity domains.
PubMed hypermobility spectrum latest
activeHSD literature that borders or feeds the hEDS corpus.
ClinicalTrials.gov EDS condition search
activeNew and updated interventional and observational trials in EDS.
Ehlers-Danlos Society research news
activeRegistry reports, HEDGE milestones, funded-study announcements, guideline updates.
HEDGE study publication watch
activeFirst HEDGE publications were expected late 2025 into 2026; watch for genetic-marker findings.
Public community venue signal scan
activeRecurring practice and comorbidity signals reported by patients; never individual posters.
Preprint servers EDS watch
activeGenetics and biomarker preprints ahead of peer review (e.g., KLK15 lineage).
International Consortium and guideline watch
activeCriteria revision proposals, management guideline updates, pediatric framework follow-ups.
Historical archive sweep
activePre-nosology case descriptions and documented folk management of joint laxity.
Run ledger
Append-only intake log. Corrections add new entries; history is never rewritten.
Initial corpus bootstrap across all five strata
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.