In an effort to overcome the current holes in clinical data regarding cause, pathogenesis and progression of the endometriosis (EM), a group of European researchers have decided to use data-mining techniques to create a database that will allow for the systematic registration and follow-up of EM patients. This effort possibly will allow a greater understanding of the disease.
The first study on the collaboration, titled “The International Endometriosis Evaluation Program (IEEP Study) – A Systematic Study for Physicians, Researchers and Patients,” was published in the latest edition of the European journal Obstetrics and Gynecology (Geburtshilfe und Frauenheilkunde).
The creation of the database involved the participation of five hospitals and surgical outpatient facilities that agreed to enter EM patient data into a multi-institutional information collective from 2013 to 2015. The patient data included information obtained from patients’ medical records, such as history and treatment, surgical intervention, histological (tissue study) findings, and any further treatment.
The analysis included clinical data from the records of 696 patients. These patients were placed into two groups based on clinical classification, with the aim of accurately assessing diagnostic and predictive tests that successfully meet the different needs of patients. The groups included:
- Prevalent Endometriosis group with patients who had been diagnosed previously during a surgical intervention, and the EM was still present or had reoccurred;
- Incidental Endometriosis group with patients who were newly diagnosed.
In the initial assessment phase of this information collaborative, researchers found there is a significant difference in regard to when a patient is diagnosed. Patients could be diagnosed anytime from a clinical suspicion to an incidental finding during surgery performed for reasons not related to endometriosis. This initial finding is important because it shows a real need for a better clinical understanding of the diagnostic pathway and the disease’s progression.
This multi-institutional information collaborative system is important because the resulting documentation system allows for clinicians and researchers working on EM to access valuable data of the history and clinical data of patients with EM, as well as combining this information with biomaterials to use for scientific studies.
The EM data that will be accessible to researchers and clinicians also can be used to evaluate clinical quality control measures in regards to EM and healthcare quality measures like the European Endometriosis League’s endometriosis center certification.
“There is little information available which could help predict the course of endometriotic disease or the course of therapy and the response to different therapies,” researchers wrote in the conclusion of their study. “Treatment center networks, research networks and study networks need to focus and combine their resources to ensure that patients receive the best treatment available and need to cooperate to develop individualized treatment concepts. Working in the interest of patients with endometriosis, these are the goals the IEEP study network has set itself,” the researchers said.