Imagine being able to contribute to research about heart problems affecting children and adults with an iPhone app. That idea is now a reality with today’s launch of the Yale Cardiomyopathy Index, an iPhone-based 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.
Developed by Yale School of Medicine researchers Dr. E. Kevin Hall, and Dr. Michele Spencer-Manzon, the app uses ResearchKit, a software framework designed by Apple, to easily turn an iPhone into a powerful gateway between leading medical institutions and patients around the world.
Cardiomyopathies are diseases of the heart muscle that limit the heart’s ability to effectively pump blood through the body. They are present in as many as 1 in 500 individuals.
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. The questions are modified to be appropriate for each age group. For the youngest group (ages 2 to 7), parents take part on their own. 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.
“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.”
With the Yale Cardiomyopathy Index app, 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.
“Understanding how these conditions affect people’s day-to-day lives is of significant importance in better treating patients,” said Hall. “We believe this app will go a long way in helping us learn how to improve patients’ quality of life.”