Penn Medicine recently launched a new Apple ResearchKit app for people with sarcoidosis. The app is a personalized tool designed to deliver informational resources about sarcoidosis, provide links to advocacy groups, as well as information about local specialists and support groups based on the iPhone’s GPS.
Users of the app can also opt in to a research study, which will provide researchers with important data about sarcoidosis. Users also have the option to answer monthly queries about their sarcoidosis symptoms, flare-ups and medication, as well as how the disease affects their lives.
The app will also optionally pull data, such as weather information and physical activity, that is tracked through the iPhone’s sensors to help researchers spot trends. With the new app, researchers will be able to record patients’ day-to-day symptoms in an effort to detect trends on what causes sarcoidosis flare-ups.
This is first time that Penn is using modules from Apple’s ResearchKit, an open-source framework for building iPhone apps that is helping medical researchers better understand and battle diseases, and making it easier for investigators to enroll participants in and conduct studies.
Launched two years ago, Apple’s ResearchKit has helped researchers collect valuable data from the iPhones of patients with Parkinson’s disease, breast cancer and asthma, who opt in to use these applications.
The ResearchKit app for sarcoidosis was developed by Misha Rosenbach, MD, an assistant professor of dermatology at the Perelman School of Medicine at the University of Pennsylvania, and Daniel O’Connor, a Penn medical student, with Marc Judson, MD, of Albany Medical College, and the Foundation for Sarcoidosis Research.
“There’s a great opportunity that has never been done,” Rosenbach said in a news release. “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 is a rare disease that causes the accumulation of inflammatory cells (granulomas) in different parts of the body — commonly the lungs, lymph nodes, heart, eyes and skin. The disease results from the body’s immune system responding to an unknown substance, most likely something inhaled from the air.
Every year from 10 to 30 out of 100,000 Americans are diagnosed with the disease. For unknown reasons, sarcoidosis disproportionately affects African Americans, particularly black women.
The largest study conducted to date in sarcoidosis, the ACCESS trial (A Case-Control Etiologic Sarcoidosis Study; NCT00005276), enrolled about 800 patients over three years in 20 U.S. medical centers, which, according to Rosenbach, was still unsuccessful in answering many critical questions about the disease.
“This new app has the potential to build up a larger cohort of more diverse patients in a shorter amount of time,” Rosenbach said. “There’s a motivated and engaged group of sarcoidosis patients who are active online, but there’s a whole host of them out there we don’t know about. This app, which can securely, privately, and anonymously collect data, casts a wide net that may engage those people, and funnel valuable, much-needed information to researchers.”
Penn researchers will now aim to determine if, with the new app, they can better understand the disease, and collect quality of life measurements used in today’s conventional clinical studies.
Researchers believe that the information gathered with the app could have an impact in the design of future clinical studies.
“We’re excited about future opportunities to repurpose the app for other rare diseases, as well,” O’Connor said. “With a strong app framework in place, ‘sarcoidosis’ could be swapped out for another disease, allowing wide networks of patients all over the country to participate in Penn studies without traveling to Philadelphia.”
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