The Citizen Endo project is an active collaboration between women with endometriosis—a disorder in which tissue that normally lines the uterus grows outside the uterus—and researchers at Columbia University specializing in biomedical informatics.
This collaboration has given rise to Phendo, an observational research app for endometriosis patients to track and manage their experience with the disease and for scientists to collect meaningful information about the disease.
Participation in the Citizen Endo project means downloading the purpose-built mobile app and using this app to record either (1) your daily experience of endometriosis, or (2) your daily life experiences if you do not experience symptoms of endometriosis.
GRADE LEVEL: 13 years and above
TIME COMMITMENT: Daily, for a minimum of 3 months
The science behind Citizen Endo:
The pathogenesis of endometriosis is still unclear. Clinical classification (histologic) of endometriosis doesn't correlate to patients’ experience of the disease, a gap the researchers aim to bridge through the citizen science project. They have two dual goals of capturing individual's experience of the disease for self management and then drawing together data from many individuals to describe the disease using data science techniques.
More specifically, the researchers seek 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). The Phendo app was built using Apple’s ResearchKit framework. The Phendo app is differentiated from other ResearchKit apps by capturing variables of a disease that is not well understood and for which phenotypes are still unclear.
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.