Researchers from Penn Medicine have launched a new ResearchKit app for sarcoidosis that will build a digital cohort of patients with this rare disease.
The new sarcoidosis ResearchKit app was developed by a dermatologist and medical student from Penn Medicine with partners from Albany Medical College & the Foundation for Sarcoidosis Research. In addition to providing patients with information about sarcoidosis and linking them with nearby specialists based on GPS location, the app will collect a range of other data.
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 – from the weather to physical activity – to help the researchers spot any trends.
Finding and recruiting patients with sarcoidosis can be challenging as it is pretty rare. That’s potentially an area where a ResearchKit app could shine, especially if they partner with other sarcoid centers. However, as we’ve seen now over and over again, the real challenge is engagement. In recently published data from MyHeart Counts, user engagement rapidly dropped off in the first few days of using the app. That’s similar to what was seen with Asthma Health. It will be interesting to see if things are different with a rare disease, where the sense of community among patients may be stronger.
Source: Penn Medicine