Patients and Data Science: What is ‘Citizen Endo’ ?

Citizen Endo is a project created by women with endometriosis, who happen to be data scientists and health researchers at Columbia University in New York.

We care about endometriosis research because we have suffered from this disease for years, along with one in every ten women across the globe. We are frustrated as patients, and unsatisfied as professionals by the slow progress toward a cure for the disease. So we’ve decided to do something about it.

What’s the Problem?

The way we see it, in order to study a disease, we need to know what it looks like. When it comes to endometriosis, there are many different ways in which the disease can manifest beyond the stereotypical painful periods and infertility. There is a disconnect between what doctors recognize as endometriosis symptoms and what patients are actually experiencing day to day. Bridging this gap is critical to further research on endometriosis.

So how do we fix this? We need to phenotype endometriosis.

A phenotype simply means a set of observable characteristics. In endometriosis, this can be the symptoms that we experience as patients such as endo belly, shooting leg pain, or exhaustion; biomarkers for the disease; or histology from tissue samples (like what you see on a pathology report after a laparoscopy).

That’s great. How will Citizen Endo help?

We are health data scientists. We make tools (like apps) to collect data together with patients, clinicians, and researchers, explore it, make sense of it, and ultimately find the signal hiding in the noise. We want to collect data from a whole lot of endometriosis patients and use this data to phenotype endometriosis. Because this is a research endeavor first and foremost, patient data is always kept private and secure. Each patient matters. Patient by patient, we are building a complete picture of endometriosis in the search of solutions and a cure.

Look out for our upcoming posts on:

Why isn’t there enough funding of endometriosis research in the US?

How do I Stay in Touch with Citizen Endo?

You can send us an email at, follow @citizen_endo on twitter, or join our Facebook group.

Patients and data science for an endometriosis cure: We bridge the gap between patient experience and clinical characterization of endometriosis.

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