Recruiting: ENDO1000 project: accelerate discovery and advance data-driven research into endometriosis diagnosis and treatment

Andy

Andy

Retired committee member
Our Mission
Our mission is to reduce diagnostic delay and develop personalised treatment approaches for individuals with endometriosis by studying data and biological samples collected from patients over an extended period of time.

Our Objective
The objective of the ENDO1000 project is to accelerate discovery and advance data-driven research into endometriosis diagnosis and treatment.

ENDO1000 will allow us to provide endometriosis sufferers with new information to empower them to make and shape decisions about their care. By developing innovative strategies to improve outcomes for patients, ENDO1000 will reduce the health burden of endometriosis, benefiting healthcare systems and society worldwide.


About ENDO1000
ENDO1000 will recruit individuals with known or suspected endometriosis and, with their permission, use tools to track their disease and health metrics over a two-year period. Through this analysis, we aim to further the research into personalised care for individuals with endometriosis.

https://www.endo1000.com/about-the-project/
 
Wanted: 1,000 women to help ‘get even’ with the agony of endometriosis

"She is now poised to take up the fight against the disease that so savagely altered her earlier life. Later this month, Macklin – who went on to found the HALO Urban Regeneration Company – will join scientists at Edinburgh University to spearhead a new project, called ENDO1000, aimed at tackling a disease that is now recognised to be a cause of widespread suffering across the globe. “It’s a chance to get even with endometriosis,” she told the Observer last week.

A total of 1,000 patients with endometriosis will be recruited to the project. Over a two-year timeframe, each woman will be asked to record their symptoms and any treatments they try, collect samples of blood, urine, faeces and saliva at home, and be given a smartwatch to monitor their symptoms, as well as the condition’s effect on sleep patterns and other aspects of daily life. Diets will be closely scrutinised and, in collaboration with international teams of scientists, researchers will try to pinpoint genetic and other risk factors that influence the disease’s onset.

Such insights into the causes and triggers of endometriosis are urgently needed, scientists say. The condition is now believed to affect up to 200 million women worldwide. Its most common symptom is chronic pelvic pain as well as pain with menstruation, and pain during sex, urination and bowel movements. Many sufferers also have trouble getting pregnant, while others suffer from severe fatigue."

https://www.theguardian.com/society/article/2024/aug/31/endometriosis-study-1000-women-wanted
 
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