OpenEndo

Endometriosis · open data

Open intelligence for a disease still waved away.

OpenEndo tracks every clinical trial, paper and grant on endometriosis in the open, so patients, clinicians, researchers and politicians can see the real state of the fight.

  • No paywall
  • No spin
  • Open source

Where things stand

190M

people live with endometriosis

Roughly 10% of women and girls of reproductive age. WHO, 2023.

6.6yr

average wait for a diagnosis

Pooled diagnostic delay across high-income countries.

0.05%

of health research funding

Endometriosis' share of public research spend, despite its prevalence.

1

diagnostic gold standard: surgery

No blood test is in routine clinical use anywhere.

Why this exists

Four facts that should not still be true

01

Pain is still normalised

Symptoms are routinely dismissed as ordinary period pain, by families, by teachers, and by clinicians. That dismissal is the single biggest driver of diagnostic delay.

WHO fact sheet, endometriosis

02

The money does not match the burden

Endometriosis costs European economies tens of billions a year in lost work and care, yet receives a fraction of the research funding given to conditions of similar scale.

EU parliamentary questions on endometriosis funding

03

Care is a postcode lottery

Access to excision surgery, specialist centres and multidisciplinary pain care varies enormously between and within countries. Most patients never see a specialist centre.

ESHRE endometriosis guideline, 2022

04

The data is scattered

Trials, publications, funding calls and policy live in separate registries that nobody aggregates. OpenEndo does the aggregation, in public, for free.

OpenEndo

Live

Research, as it happens

Pulled straight from ClinicalTrials.gov and PubMed each time this page loads.

Trials recruiting worldwide

Trials registered in Denmark

New papers, last 7 days

Open the full dashboard

Funding

Grants worth chasing

Deadlines that could move the field, if anyone applies.

Take action

What actually helps

Add data, not opinions

Every dataset, source and script behind this site is public. Fix a number, add a registry, translate a page.

Open the repository

Find a trial you can join

Recruiting studies are listed with sponsor, phase and country. Bring the record to your own clinician.

Browse recruiting trials

Send the numbers upward

Funding decisions are made by people who have never seen these figures side by side. Send them the dashboard.

Share the dashboard