Story
Endometriosis can have a destructive impact on quality of life, participation in daily and social activities, physical and sexual functioning, relationships, educational and work productivity, mental health, and well-being.
It causes serious and debilitating symptoms, such as chronic pelvic pain, pain with menstruation, and pain during sex, urination and bowel movements.
Many endometriosis sufferers also have trouble getting pregnant and suffer from fatigue.
It is estimated that at least 190 million women may have endometriosis worldwide but this is probably an underestimate.
Although some cases can be diagnosed with imaging, there are currently no reliable blood tests for endometriosis and many people have to wait for surgery to look inside the pelvis (laparoscopy) for endometriosis lesions to make the diagnosis.
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.
Our innovative approach will gather rich data that sheds light on the everyday experiences of those living with this condition. By collecting information from participants over time, we’ll be able to spot patterns and make meaningful comparisons among individuals.
Here’s how it works: patients will use an app to share their experiences, creating a unique timeline of their journey with endometriosis. At the same time, smartwatches will track physical activity, sleep, and daily rhythms, giving us a real-time look at their lifestyle. We’ll also gather insights about their diets through questionnaires about their food preferences.
But that’s not all! We’ll delve into the gut microbiome—the tiny organisms living in our intestines—and look at their products, as well as measure inflammation and hormone levels. By combining all this information, we’ll build a detailed picture of how lifestyle choices, surgery and medical treatments impact endometriosis symptoms.
We hope the data collected will allow us to develop treatment guidelines for doctors to allow more personalised treatment plans that are more likely to be effective for women with the disease. Together, we can pave the way for a brighter future for those affected by this condition.
Thank you for donating to ENDO1000 today.