Mobile App Designed to Study Rare Inflammatory Condition

Sarcoidosis research app (University of Pennsylvania)

18 January 2017. Researchers at University of Pennsylvania medical school developed an iPhone app to study sarcoidosis, a rare inflammatory disease where the cause is still unknown. The app is now available for download on the iTunes App Store.

Sarcoidosis is a condition marked by growths of granulomas, collections of inflammatory cells that appear in various regions of the body, but most likely the skin, eyes, lungs, and lymph nodes. The cause of the disease is unknown, but is believed to be related to immune-system reactions to irritants in the environment. In most cases, the condition is temporary, requiring little, if any treatment, but for some people the condition becomes chronic and can lead to organ damage. While generally a rare disorder, sarcoidosis affects 34 of 100,000 African-American people, compared to 11 of 100,000 Caucasians.

The team led by Penn dermatology professor Misha Rosenbach seeks to harness mobile technology to get a better understanding of this rare disease from people affected by it. The app and research study ask people with sarcoidosis to complete monthly surveys about flare-ups of the disease, medications taken, and the effect of the disorder on their day-to-day lives. The app can also, with consent of the user, track weather at the individual’s location and the person’s physical activity, which can be correlated to data from the surveys.

In addition, the iPhone app provides information about sarcoidosis, including resources for people with the condition, whether or not they take part in the research. Based on the phone’s GPS, the app can also direct individuals to medical specialists and support groups in their vicinity.

Because of the relatively small numbers of people with sarcoidosis, Rosenbach and colleagues hope the app can answer questions about the disease where traditional research methods have failed so far. A study carried out between 1995 and 2003, says Rosenbach, enrolled some 800 individuals with sarcoidosis but did not provide conclusive findings.

“In traditional research,” says Rosenbach in a university statement, “you can’t see patients every day, but in app-based research you can suddenly get all this information about the disease in real-time and over time, from many different patients all over the world. It gives us the power to do sarcoidosis research in a way that has never been done.”

The app — developed with Penn medical student Daniel O’Connor and Marc Judson, an internist in Albany, New York — is built on the Apple ResearchKit, an open-source app framework designed to collect data for medical studies. ResearchKit provides modules for tracking activity, conducting surveys, and gaining user consent. As reported in Science & Enterprise, ResearchKit is being adopted by a number of research teams, including the consumer genetics company 23andMe.

Rosenbach tells more about the app and study in the following video.

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