ENDO1000 — a UK-wide project on endometriosis
ENDO1000 - A UK-wide Endometriosis Research Project
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 type | Observational |
|---|---|
| Enrollment | 1000 (estimated) |
| Ages | 16 Years and up |
| Sex | Female |
| Sponsor | University of Edinburgh Academic / other |
| Locations | 1 site (Edinburgh) |
| Trial ID | NCT07240883 on ClinicalTrials.gov |
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.
Who should consider this trial
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.
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.
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 performed: 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.
Eligibility criteria
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 this trial is running
Edinburgh
- 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
How to participate
- Review the eligibility criteria above with your treating physician.
- Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
- Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.