Penn Medicine is joining the “ResearchKit craze” with an app focused on patients with sarcoidosis, which is an inflammatory condition that can affect the lungs, skin, eyes, heart, brain, and other organs.

The application was developed by Misha Rosenbach, MD, an assistant professor of Dermatology in the Perelman School of Medicine at the University of Pennsylvania, and Daniel O’Connor, a fourth-year Penn medical student, in collaboration with Marc Judson, MD, at Albany Medical College as well as the Foundation for Sarcoidosis Research. It supplies links to disease information and advocacy groups, and directs patients to specialists in their area based on their phone’s GPS. Patients will have the ability to opt in to a research study which can provide researchers with a trove of data about this rare disease. Optional, once-a-month surveys will query users about, for example, their symptoms and flare ups, how sarcoidosis affects their lives, and medications. The app will also optionally pull data naturally tracked through sensors on iPhone to help the researchers spot any trends.

Among potential queries the technology will allow investigators to explore:

• 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?

“There’s a great opportunity that has never been done,” Rosenbach said. “In traditional research, 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.”

Sarcoidosis, which occurs in the lungs for about 90 percent of patients, is diagnosed in anywhere between 10 to 30 out of 100,000 Americans each year. It can affect nearly anyone, but disproportionately affects African Americans, particularly black women.

The exact cause of sarcoidosis is unclear, but many researchers agree it starts from an immune response to some foreign material trigger, such as an atypical infection. When the body encounters a foreign material that it can’t fight off, it builds up a protective wall of inflammatory cells called a granuloma – lumps of cells. In sarcoidosis patients, this production never shuts off — it keeps going and going, resulting in numerous granulomas — that can damage organs, particularly the lungs.

The largest study to date, the ACCESS trial (A Case-Control Etiologic Sarcoidosis Study), enrolled about 800 patients over a three-year period across 20 medical centers in the United States, and still failed to completely answer many critical questions.

Data gathered from the app could impact how tomorrow’s clinical studies are designed.