Clinical trial Recruiting at 1 site Observational Ages 16 and up Women only

ENDO1000 — a UK-wide project on endometriosis

Official title: ENDO1000 - A UK-wide Endometriosis Research Project

Run by University of Edinburgh · NCT07240883 · Data updated 2026-11-12

This project will collect symptom reports, medical information, and biological samples from people in the UK with diagnosed endometriosis to try to find patterns that speed diagnosis and improve care.

Quick facts

Study typeObservational
Ages16 Years and up
SexWomen only
Enrollment1000 (estimated)
SponsorUniversity of Edinburgh
Academic / other
Locations1 site (Edinburgh)
StatusRecruiting
StartedDecember 5, 2025
Main results expectedDecember 31, 2030
Study endsDecember 31, 2030
Registry record updatedJune 24, 2026
Trial IDNCT07240883 on ClinicalTrials.gov

Is this trial a fit for you?

Likely a good fit

Ideal candidates are UK residents aged 16 or older with a clinical diagnosis of endometriosis in the past 10 years who can use the ENDO1000 mobile app or web equivalent and are willing to provide samples and symptom data.

Probably not a fit

People who are pregnant, have known severe coagulation disorders, or active Hepatitis B/C or HIV (and those without a clinical diagnosis or who live outside the UK or cannot use the app) will not be eligible and thus are unlikely to benefit from participation.

A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.

What this trial studies

ENDO1000 is a UK-wide, longitudinal observational project that combines mobile app or web-based symptom tracking with clinical records and biosample collection to create a large, multimodal dataset. Participants aged 16 and over with a clinical diagnosis of endometriosis within the past 10 years are invited to report symptoms and provide samples remotely where possible. The project excludes pregnant people and those with certain infections or severe coagulation disorders because of sample-postage and safety rules. Collected data aim to support data-driven research on diagnosis, pain management, and personalized treatment pathways over time.

Why it matters

Potential benefit: If successful, the project could help shorten the diagnostic delay and enable more personalised pain management for people with endometriosis.

How similar studies have gone: Prior observational cohorts and app-based symptom-tracking projects in endometriosis and other conditions have produced useful insights, but large UK-wide efforts combining longitudinal app data, clinical records, and biosamples remain relatively novel.

Who can join: the full rules

Show full inclusion / exclusion criteria
INCLUSION CRITERIA

1. Aged 16 or over
2. Participants who confirm that they have received a clinical diagnosis of endometriosis (based on MRI, ultrasound or laparoscopy) within the last 10 years
3. Living within the UK
4. Willing and able to consent to installing and using the mobile ENDO1000 app on their smartphone or use our web-based equivalent.

EXCLUSION CRITERIA

1. Pregnant
2. Known severe coagulation disorder
3. Known active Hepatitis B/C and/or HIV (due to Royal Mail restrictions on biospecimen postage)

Where it's running

  • University of Edinburgh
    Edinburgh, United Kingdom
    Recruiting

Study contacts

  • Principal investigator: Andrew W Horne, PhD, MB ChB — University of Edinburgh
  • Study coordinator: Ann M Doust, DipN
  • Email: ann.doust@ed.ac.uk
  • Phone: +4478910643488

Similar studies

Other studies for the same condition or treatment. Recruiting studies are listed first.

How to take part

  1. Review the eligibility criteria above with your treating physician.
  2. Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
  3. Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.
Last reviewed 2026-11-14 by the Find a Trial editorial team. Information on this page is for educational purposes and is not medical advice. Always consult qualified healthcare professionals about clinical trial participation.