The Yale Cardiomyopathy Index is an exciting iPhone-based clinical study for people in the United States aged 2 to 80 years who have a cardiomyopathy or are at increased risk for developing one. This study is one of the first to be designed with the assistance of Apples ResearchKit software.
With the Yale Cardiomyopathy Index app, eligible individuals contribute self-assessments of their Quality of Life across multiple domains and perform 6-minute walks to assess peak distance covered and heart rate trends. Educational resources to assist in understanding these conditions are available within the application.
This study, approved by the Yale University Institutional Review Board, is the first to use ResearchKit and HealthKit to better understand the issues affecting children and young adults. With a parent or guardian’s permission and co-participation, children as young as 8 years of age provide an assessment of how their cardiomyopathy or their risk of developing a cardiomyopathy affects their daily lives. Parents of those 2 to 8 years of age can take part on their own with tailored questionnaires designed to assess how a cardiomyopathy affects their younger child. Adults between 18 and 80 years may take part on their own. Multiple people from the same family can take part simultaneously within this app.
Quality of Life is the perceived quality of someone’s daily life. It can be influenced by many variables including presence of a medical condition or risk of developing an inheritable condition found within one’s family. Cardiomyopathies are diverse diseases of the heart muscle which may adversely limit the ability of the heart to pump blood to the body and are present in as many as 1 in 500 individuals. Understanding how these conditions affect people’s day-to-day lives is of significant importance in treating patients.