Developing CHD Surveillance System

Congenital Heart Diseases (CHD) cause defects in the structure and function of the heart which disrupts the flow of blood through the heart. According to the CDC www.cdc.gov, CHDs have been found to be the most common birth defect, a leading cause of infant mortality, and may be associated with genetic conditions. 

Earlier in 2017, Representative Bilirakis https://billrakis.house.gov introduced (H.R 1222) “Congenital Heart Futures Reauthorization Act of 2017” www.congress.gov to amend the Public Health Service Act. The bill was referred to the House Committee on Energy and Commerce https://energycommerce.house.gov.

The amended bill calls for authorization for a “National, Congenital Heart Disease Surveillance System” to enable HHS to better coordinate federal Congenital Heart Disease (CHD) research efforts and at the same time, improve public education and awareness of congenital heart disease.

The amendment calls for CDC to expand surveillance activities related to CHD, and would require CDC to provide grants to study CHD. In 2017, $4 million was authorized for the studies related to CHD to include expanding the infrastructure to track the epidemiology of CHD. The goal is to organize the information into a nationally representative, population-based surveillance system to be used to compile data on the actual occurrences of CHD.

Applicants for grants to expand the knowledge of CHD may include public or private nonprofit entities with specialized experience in CHD. Specific data is needed to help CDC expand surveillance activities in terms of demographic factors, risk factors, causes for the disease, treatment approaches, outcome measures, and longitudinal data. The data would then be made available to the public and to CHD researchers.

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