Getting to the bottom of endometriosis with Lucy
Excruciating pelvic pain on a daily basis, bloating, nausea, fatigue, and even infertility, are some of the symptoms women with endometriosis suffer. However, it takes somewhere around 7 years to diagnose the condition. Researchers supported by the EU-funded FEMaLe project are working to change this. As part of their new study, they are inviting women with and without endometriosis across Europe to complete a monthly questionnaire for 1 year using a mobile app called Lucy. Through the app, participants will be able to report endometriosis symptoms, if any, and provide sociodemographic data, mental and physical health information, as well as details on diet and lifestyle. This data will be used to help speed up diagnosis and develop new and targeted treatments. Endometriosis is a chronic condition in which tissue similar to the tissue lining the inside of a woman’s uterus – the endometrium – grows outside the uterus, usually in the ovaries, fallopian tubes and pelvis. Like the tissue in the uterus, it thickens, breaks down and bleeds during each menstrual cycle. However, unlike this tissue, it has no way to exit the body and becomes trapped, leading to many complications.
Explaining the delay
“Unfortunately, there is no non-invasive way to diagnose endometriosis, especially in the early stages,” states Assoc Prof. Attila Bokor of FEMaLe project partner Semmelweis University, Hungary, in a news item posted on the university’s website. “Only a laparoscopy (cutting small holes in the abdomen to put through a tube with a camera into the stomach area) will show if someone suffers from the disease. The signs of the illness can be picked up from the patient’s medical history or an ultrasound scan, but to fully confirm the condition, patients need to go through an expensive and unpleasant procedure, which could be one reason for the diagnostic delay.” In their ambitious study, the research team hopes to include 10 000 women with endometriosis and 10 000 healthy women who will provide information via Lucy over a period of 12 months. “We need many participants, and the Lucy app is available throughout Europe in Danish, English, French, German, Hungarian, Italian, and Swedish already,” explains research fellow Dr Dora Balogh, also of Semmelweis University. “By signing up, the key is to fill out the questionnaire every month so we can monitor the development of the disease.” Endometriosis has three major forms: ovarian cysts, peritoneal endometriosis and deep-infiltrating endometriosis. The hope is that the data collected through the app will help researchers identify potential patient groups and lifestyle and dietetic factors that may contribute to the condition’s development or help treat it. “We want to see if any typical characteristics of these patient groups can determine the form of endometriosis they develop. Furthermore, we hypothesize that some lifestyle factors, e.g. consumption of saturated fats, red meats, and refined sugars, might negatively affect the disease. Hopefully, the anonymized questionnaires will also help us clarify these aspects,” remarks Dr Bokor. Chief Consultant Ulrik Bak Kirk of FEMaLe (Finding Endometriosis using Machine Learning) project coordinator Aarhus University, Denmark, adds: “FEMaLe is on a special quest to really reduce time to diagnosis, identify new treatment options, and to help improve the quality of life of approximately 190 million women worldwide suffering from the disease.” The project ends in 2024. For more information, please see: FEMaLe project website
Keywords
FEMaLe, endometriosis, uterus, endometrium, tissue, woman, female, app, Lucy, disease