What Are Endometriosis Patient Databases and Why Are They Important?

Endometriosis affects up to 10% of women of reproductive age. But despite its high incidence, doctors still don’t fully understand endometriosis. In great part, this is due to the lack of prior research studies. Current strategies to further the understanding of endometriosis include patient databases.

What benefits do they offer?

Endometriosis databases allow the collection of large amounts of data to get the full scope of the disease, its causes, and patients’ responses to treatments.

The collection of detailed clinical histories, tissues specimens, and blood samples can help researchers and clinicians study the underlying causes of the disease as well as its pathogenesis.

It can also give insights into how different patients from different populations respond to different treatments for example.

Moreover, the development of biobanks and datasets might lead to the identification of new disease risk factors and biomarkers. This can allow the standardization of the definition of the disease and the improvement of treatments.

It is important to note that, for these databases, the quantity of the data is as important as quality. Robust, long-term studies with a large amount of clinical data and biological samples can help to accurately identify the long-term outcomes and effectiveness of different treatment approaches. Of note, these databases are de-identified, meaning that patients’ personal information is protected.

The advantage of excision surgery

The correct and timely diagnosis of patients with endometriosis is extremely important. This is because sub-optimal treatments, including incorrect surgeries, can further debilitate patients. This could negatively affects patients’ physical health, as well as mental well-being, relationships, and everyday activities.

Excision surgery, that Dr. Seckin highly prefers, as opposed to ablation, is currently the gold standard of treatment for endometriosis. As an added bonus, excision surgery allows for the collection of endometriosis lesions that can be sent to pathology for accurate histological diagnosis. Moreover, these collected lesions can be added to biobanks allowing researchers to better study the disease.

Endometriosis databases

In recent years, researchers have implemented online documentation systems and started endometriosis databases. For example, one such approach introduced an online multicentre documentation system to facilitate the establishment of a prospective multicentre case-control study. This study, called the IEEP (International Endometriosis Evaluation Program) study combined the clinical information of several hundreds of patients with biomaterials. Scientists can now use this information for new studies as well as for the certification of endometriosis centers.

The Endometriosis Pelvic Pain Interdisciplinary Cohort Data Registry (EPPIC) has been recruiting patients for a few years now. Their aim is to investigate the long-term patient outcomes, prognosis, predictors, causes, and treatment of pelvic pain and endometriosis.

These databases, aligned with other study strategies, will further the insights into endometriosis and allow more focused studies, which will lead to better disease management in the long run.

Have you ever considered joining a patient database? Please share your thoughts with Seckin Endometriosis Center and comment on our post on Facebook or Instagram.