ResearchKit: First Endometriosis Tracking Study App, Phendo, Launched by Columbia University Researchers and Applied Informaticsby Priya Menon
New York City, January 04, 2017 – A team of researchers in the Department of Biomedical Informatics at Columbia University Medical Center have launched Phendo, a research study app for self-tracking and management of endometriosis symptoms. Developed by Applied Informatics, the observational research app is an initiative of Columbia University’s Citizen Endo project which is headed by data scientist and Associate Professor Noemie Elhadad.
Endometriosis affects 1 in 10 women and is estimated to create a $119 billion impact on the US economy annually. The disease is caused when tissue called endometrium that normally lines the inside of the uterus grows outside of the uterus. Endometriosis is still considered a mysterious condition, and there are many ways in which the disease can present itself in patients. There is a disconnect between how doctors think about the disease and what patients experience on a daily basis.
The aim of the Phendo study is to bridge the gap between patient experience of endometriosis and clinical understanding of the disease. The Phendo app allows participants to track individual symptoms of endometriosis, and in the process, enable them to catalogue how the disease manifests for both patient’s self-management as well as for research and clinical understanding of the disease. The Phendo research study has been approved by the Columbia University IRB and participants consent to join the study through the app. Women who suspect they have endometriosis or have already been diagnosed with endometriosis are eligible as participants (other eligibility criteria include being over 13 years old and having had at least one menstrual period). Anyone who has had at least one menstrual period in their lifetime is eligible to use the app as a control participant.
The Citizen Endo team employs participatory design to engage patient users and build a meaningful tool for self-tracking using both moment- and day-level surveys to document users’ experience of living with the poorly understood chronic disease. This means that some features of the app are still under development and the team is actively seeking feedback from the app’s user community.
Phendo was built using Apple’s ResearchKit framework. The Phendo app is differentiated from other ResearchKit apps by capturing variables of a disease for which phenotypes are still unclear. The Citizen Endo team partnered with Applied Informatics for this project based on their extensive experience with Apple’s ResearchKit since launching America Walks, a cross platform ResearchKit enabled study app.
Currently, Dr. Elhadad says Phendo’s near 1,000 users are primarily based in the United States and New Zealand, with participants also joining from Canada, the U.K, Australia, Europe, and south pacific nations. The research team is looking into releasing versions in multiple languages to reflect the global impact of endometriosis.
Phendo is available for download on Apple Store. The app is available now in iOS, with an Android version expected sometime in 2017.
About Citizen Endo Project, Department of Biomedical Informatics, Columbia University
Citizen Endo (citizenendo.org) is a research project based out of Columbia University’s Department of Biomedical Informatics. The team, led by Dr. Elhadad, is engaging in multiple research studies under the Citizen Endo umbrella which focus on bridging the gap between patient experience of endometriosis and clinical understanding of the disease. One of these projects is the Phendo app.
About Applied Informatics
Applied Informatics is a NYC based Health IT company, founded in 2008 by two graduate students of Columbia University’s Department of Biomedical Informatics. Applied Informatics built the first walking study app, America Walks, available on both iOS and Android devices using Apple’s ResearchKit library and ResearchDroid, an Android version of ResearchKit. To learn more about developing cross-platform Research kit apps visit: http://appliedinformaticsinc.com/mobile-researchkit-study-apps/.