Sarcoidosis AppApril 4, 2017 at 1:44 pm
By Tom Stibolt, MD, Mobile Musings Column Editor
April is Sarcoidosis Awareness Month and a great time to mention a research app now available for Sarcoidosis patients. The app was developed at the University of Pennsylvania by Misha Rosenbach, MD, an assistant professor of dermatology, and Daniel O’Connor, a fourth-year medical student in collaboration with Marc Judson, MD, at Albany Medical College, as well as the Foundation for Sarcoidosis Research. It uses the Apple ResearchKit app and marks Penn’s first time using modules from this framework as part of the institution’s focus on mobile health and innovative research strategies. Since it relies on the Apple ResearchKit, it is only available for iOS devices and currently can only be downloaded to iPhones.
The app is a personalized tool designed to help track the effects of sarcoidosis and its treatments on patients’ daily lives. It is hoped that the insights gained from the study may help raise awareness of the impact of sarcoidosis, with the goal of improving quality of life for people suffering from Sarcoidosis. The app also provides information about Sarcoidosis, information about national advocacy groups as well as local support groups, lists of local Sarcoidosis experts, and has the ability to track physical activity and sleep quality.
Participation in the research activities is optional. To participate in the research portion, users must be at least 18 years old, live in the United States and be comfortable reading English on a mobile device. There are plans to expand research outside of the United States, to support languages other than English and possibly expanding to Android devices.
The researchers hope to answer questions such as: When sarcoidosis is flaring, are patients walking fewer steps? Do they miss work? Does their disease flare after a week’s worth of sunny days? Does geographic location affect symptoms? Is there a seasonal variability? How quickly do patients respond to treatments? They see an app-based research approach as potentially able to gather information about the disease in real-time and over time, from many different patients all over the world. They believe that it will give then the power to do sarcoidosis research in a way that has never been done previously. Data gathered from the app could impact how tomorrow’s clinical studies are designed.
More information is available at: https://itunes.apple.com/us/app/sarcoidosis/id1188827249?mt=8. The 5-star reviews were placed at the request of the university.
Editor’s note: The ATS does not endorse any of the programs or products mentioned in this column.