The Boston Center for Endometriosis is establishing the first longitudinal study across adolescence and through adulthood that is focused on endometriosis and pelvic pain. This research includes data and biologic sample collection that is stored in a clinical database and biorepository.
Our biorespository allows us to store blood, saliva, and tissue from young and adult women diagnosed with endometriosis, which is then analyzed and banked. The biorespository serves to provide samples to study so that our scientists and researchers can discover a nonsurgical method such as a blood or saliva test to diagnose endometriosis. We are hopeful that research studies will lead to new treatments and ultimately a cure for endometriosis.
Our clinical database is where we store or “bank“ information in a form that can be processed by computers. A clinical research database is a tool used as part of the data collection process. A database allows for the storage of research data in an organized fashion that can include information collected from web-entry by participants, clinical and surgical details from physicians, and results of tests from laboratories. This database allows us to efficiently combine large amounts of information contributed by many participants among whom we can then search for patterns that indicate endometriosis risk and also successful response to lifestyle (for example diet or physical activity recommendations) and clinical treatment (for example medications or surgery). The clinical database is firewall and password protected. Only a small number of study team members (who have been approved by the hospital review board) can access the data directly.
A biorepository is a facility that collects, catalogs, and stores samples of biologic material such as; urine, blood, tissue, cells, DNA, RNA, and protein, from humans, animals, or plants for laboratory research. Samples collected from the Center participants, along with information from the clinical database will be combined with results from tests conducted in laboratories. Our biorepository is a secure laboratory facility with access limited to scientists involved in Center approved research. All samples are stored with a unique identification number that can be linked to the participant information in the clinical database by the small number of approved study team members but doesn’t indicate any personal information to the scientists handling the samples. Specimens are always maintained in appropriate environments, for example, -80 degree C freezers, to ensure long term stability.