Yale is the latest institution to join the ResearchKit craze, having launching the Yale Cardiomyopathy Index clinical study to better understand quality of life for people ages two to 80 who have or may develop a cardiomyopathy — an abnormality in the heart muscle that is present in as many as 1 in 500 individuals.
Developed by Yale School of Medicine researchers Dr. E. Kevin Hall and Dr. Michele Spencer-Manzon, the app turns the iPhone into a “powerful gateway between leading medical institutions and patients around the world.”
Parents and their children ages 2 to 18 can take part in the study together, with tailored questionnaires designed to assess how a cardiomyopathy affects children of different age groups. For the youngest group (ages 2 to 7), parents take part on their own; and as the children get older – each age group has questions that reflect important issues for those children. Adults between age 18 and 80 participate on their own.
Using Yale Cardiomyopathy Index, eligible individuals contribute self-assessments of their quality of life and heart-related symptoms.“Our study is the first to use ResearchKit to better understand these heart issues affecting children and young adults,” said Hall, assistant professor of pediatric cardiology and Director of the Pediatric Heart Failure Program at Yale School of Medicine. “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.”
Using Yale Cardiomyopathy Index, eligible individuals contribute self-assessments of their quality of life and heart-related symptoms. They may also perform six-minute walks to assess physical function and heart rate trends. Educational resources are available within the application to assist in understanding the cardiomyopathies.