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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 present itself in patients. There is a disconnect between how doctors think about the disease and what patients experience on a daily basis. Bridging this gap is critical to further research on endometriosis. Citizen Endo will use a series of studies to better understand the disease from the perspective of patients.
We are academic researchers who make tools (like mobile apps) to collect health data, explore it, and generate meaningful insights. We need patients' help to make this project a success. Success means engaging patients as active participants in our research so that we can gain a comprehensive description of the disease through patient-generated health data. We also seek to help patients make sense of the data they generate.
Are you a patient that has an endometriosis-related research question of your own? Share it!
June 23, 2017
"Citizen Endo’s Goal: 10,000 Women Using Its Mobile App to Track Endometriosis by 2018"
May 5, 2017
Columbia University Medical Center
"With Columbia App, Women with Endometriosis Become Citizen-Scientists"
"Crowdsourcing Comes to Endometriosis"
March 3, 2017
"This App for People with Endometriosis Lets Patients Contribute to Research"
July 13, 2016
"Citizen Endo Project Creates Phendo, a Tracking App for Women With Endometriosis"
1. Phendo (November 2016-Present, Open)
2. ENDL (April 2017-Present, Open)
ENDL is a study to understand the relationship between the menstrual cycle, pain, and quality of life. Learn more here. Ready to get started? You can participate by downloading the app for iOS or the app for Android. Have feedback? Email us!
3. Medical Documentation Survey (Completed)
Online survey to assess endometriosis patents' access to medical documentation related to their regular medical care and endometriosis-related surgeries. Participants were also asked about their willingness to share their medical documents with researchers.
4. Phendo Live Testing (Completed)
In-person interviews (taking place in Manhattan) were conducted to assess the Phendo self-tracking and research app among women officially diagnosed with endometriosis.
5. Designing Phendo (Completed)
This card sorting activity was used to help prioritize and organize particular variables and functionalities within Phendo. Completed in September 2016.
6. Self-Tracking Variables Study 2 (Completed)
In this study, we were interested in finding out about the menstruation history, symptom onset, commorbidities, allergies, and diet of women with endometriosis to understand how to support self-tracking of these variables. Conducted and completed in August 2016.
7. Self-Tracking Variables Study 1 (Completed)
In this study, we were interested in finding out about the experiences and preferences for tracking pain, emotions, medications, and self-management techniques among women with endometriosis. Conducted and completed in July 2016.
8. Self-Tracking Among Women With Endometriosis (Completed)
A series of focus groups took place with women who were officially diagnosed with endometriosis and located in the New York City area to understand self-tracking among women with endometriosis. Conducted and completed in February 2016.
1. McKillop M, Mamykina L, Elhadad N. Designing in the Dark: Eliciting Self-Tracking Dimensions for Understanding Enigmatic Disease. 2018. ACM CHI Conference on Human Factors in Computing Systems. PDF.
2. McKillop, M., Voigt, N., Schnall, R., & Elhadad, N. (2016). Exploring self-tracking as a participatory research activity among women with endometriosis .J Participat Med, 8, e17. [HTML]
Associate Professor in Biomedical Informatics at Columbia University. Researches at the intersection of data science & medicine.
PhD student in Biomedical Informatics at Columbia University. Researches at the intersection of personal informatics, citizen science, & mHealth.
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