Yale has launched a study for people who have or may develop cardiomyopathy, a disease of the heart muscle, on ResearchKit, Apple's open source platform that helps researchers build medical apps and recruit patients for clinical trials.
The iPhone-based study, called the Yale Cardiomyopathy Index, was developed by Yale School of Medicine researchers E. Kevin Hall and Dr. Michele Spencer-Manzon. Participants will take self-assessments about their quality of life and heart-related symptoms. They also have the option to perform six-minute walk tests that analyze their physical abilities and heart rate trends. The app also offers educational materials about the cardiomyopathies.
The study is open to anyone between the ages of 2 and 80. For anyone under 18, parents will take part in the study with their children and for participants aged 2 to 7, parents will take part in the study on their own, answering questions for their children. These younger age groups are given a different set of surveys that aim to identify how a cardiomyopathy affects them.
“Our study is the first to use ResearchKit to better understand these heart issues affecting children and young adults,” Hall said in a statement. “With a parent or guardian’s permission and co-participation, children as young as 8 can provide assessments of how their cardiomyopathy, or their risk of developing a cardiomyopathy, affects their daily lives.”
Reports about this study first came out in May. At the time, Buzzfeed reported that Hall, an assistant professor of pediatric cardiology and Director of the Pediatric Heart Failure Program at Yale School of Medicine, coded the app himself in his spare time.
ResearchKit has been live for about six months now. One of the first five apps to launch on ResearchKit, called Asthma Health, was updated earlier this week. With the new feature added to the app, called Doctor Dashboard, the app developers will push the app beyond the realm of research and into clinical use. Since launching Asthma Health, the researchers recruited and enrolled over 8,600 research participants. With this new feature, these participants can press a button and show their doctors a summary of the health data they tracked within the app.