Research Projects at Citizen Endo
Active Projects
Phendo App
Phendo is a free research app to track, manage, and understand endometriosis. Opportunities to reflect upon your data may help you in managing your disease.
The app is available on the App Store and Google Play.
What can we learn about patients experience of disease?
Citizen Science enables researchers to learn more about the experience of the disease.
Our research project Phendo has over 15,000 users contributing their data to better understand endometriosis. Phendo participants can access their data and contact the researchers at any time. The data collected is stored on HIPAA-certified servers that only researchers and research collaborators have access to.
By participating, users gain insights on their own disease experience and how to manage their endometriosis. Additionally, their active participation has allowed us to contribute to the scientific community with papers such as:
- Augmenting the Clinical Data Sources for Enigmatic Diseases: A Cross-Sectional Study of Self-Tracking Data and Clinical Documentation in Endometriosis
- Learning endometriosis phenotypes from patient-generated data
- Phenotyping Endometriosis through Mixed Membership Models of Self-Tracking Data
You can read more of our papers here.
Funding
We gratefully acknowledge support from the National Library of Medicine (award R01 LM013043) and the Endometriosis Foundation of America.
