[III-JCKAP8-4] Report from the Research Group of the Japanese Ministry of Health, Labour and Welfare
Keywords:transition, adult congenital heart disease, research roup
This study aims not only to improve the quality of life of patients with congenital heart disease (CHD) so that they can receive appropriate transitional care and have a good long-term prognosis throughout their lives. We will continue various activities in collaboration with related academic societies and patient groups. Specifically, we will conduct a nationwide survey of new patients with CHD, establish diagnostic criteria and treatment guidelines, support the establishment of a lifelong training program for pediatric cardiovascular surgeons, develop the infrastructure for digitized school ECG screening, establish seamless transitional care, conduct research on patients who have dropped out of care, and research on resuming medical care. The goals are to implement various medical measures to improve the long-term prognosis and quality of life of patients, including the establishment of diagnostic criteria and research into treatment and prevention methods for liver cancer, the development of personal health records using smart phones, the provision of information to patients through a website, support for the independence of adolescent patients, and support for schooling and employment.