Researchers launch iPhone ResearchKit app for sarcoidosis patients
An iPhone app called ResearchKit, previously used in conditions such as Parkinson’s and cancer, has now been designed to provide learning resources for patients with sarcoidosis. The app is expected to also provide potential research data that may enable investigators to learn more about this condition.
ResearchKit app, launched by researchers from the Perelman School of Medicine at the University of Pennsylvania in Philadelphia, is an open source software framework designed for medical research that allows doctors and scientists to obtain data at a frequent rate from participating iPhone users. Since its initial launch two years ago, data has been collected from patients with conditions ranging from Parkinson’s disease to breast cancer, allowing the information collected to be studied in order to gain a better understanding and further treatment of these diseases.
This app was developed by Dr. Misha Rosenbach, an assistant professor of dermatology at the Perelman School of Medicine, and Daniel O’Connor, a fourth-year University of Pennsylvania medical student, in collaboration with Dr. Marc Judson, chief in the Division of Pulmonary and Critical Care Medicine at Albany Medical College in Albany, N.Y. as well as the Foundation for Sarcoidosis Research.
Features of ResearchKit app
Features of the app include informational resources for patients, links to disease information and specialists in the area, all tracked by the phone’s GPS.
The app users will also have the opportunity to enroll in a research study to help researchers learn more about sarcoidosis. Users will be given the option of filling out monthly surveys that will query about, for example, the symptoms they experienced, medication history, as well as details about condition flare-ups, and how sarcoidosis affects their lives. The app will also optionally pull data that is typically tracked through sensors on iPhones—from the weather to physical activity—to help the researchers spot any trends.
This technology will allow the researchers to investigate the following:
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 seasonal variability?
How quickly do patients respond to treatments?
App has potential to build larger cohort of sarcoidosis patients
Dr. Rosenbach reported that this technology provides an opportunity to undertake sarcoidosis research in a way that has never been done. “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,” he said.
When it comes to medical research, the sample size is crucial and a shortage of patients during clinical testing can provide major issues in terms of credibility.
The ACCESS trial (A Case-Control Etiologic Sarcoidosis Study) is the largest study to date with approximately 800 patients enrolled over a three-year period across 20 medical centers in the United States, according to Dr. Rosenbach. This study with all its resources has still failed to completely answer many important questions regarding this disease.
“This new app has the potential to build up a larger cohort of more diverse patients in a shorter amount of time,” said Dr. Rosenbach, who was quoted in a press release. “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.”
The source of sarcoidosis is not well understood, yet many agree that it stems from an immune response such as an atypical infection.
With this new app, researchers will be able to determine if it effectively assists in studying the disease and collecting quality of life measurements used in conventional clinical studies. The data from this app can influence and restructure the way clinical trials are designed and give the science community a better grasp at how to deal with this disease.
“We’re excited about future opportunities to repurpose the app for other rare diseases, as well,” said O’Connor, the fourth-year medical student. “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 travelling to Philadelphia.”
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