Advocate for your heart warrior by learning about current policy priorities (S. 477/H.R. 1222) and attend the next national conference in Washington DC. You can also find info on the 6th Summit on Transparency and Reporting.
For more info, click here!
Children with CHD become adults with CHD. This organization is helping to bridge the gaps in care, providers, and long term outcomes. They have been collaborating with centers across the country to develop an accreditation program to meet the needs of adults living with CHD.
Founded in 1996, The Children's Heart Foundation is the country's leading organization solely dedicated to funding congenital heart defect (CHD) research. Click here for more info!
Learn more about research results and available studies for young children and young adults with congenital or pediatric-acquired heart disease.
The Pediatric Heart Network (PHN) was established in 2001 by the National Heart, Lung, and Blood Institute (NHLBI) of the National Institutes of Health (NIH). It was created to help doctors and nurses design and carry out clinical research so that children with heart disease can receive high-quality, evidence-based care. This article describes the structure and tasks of the PHN, reviews existing studies and describes challenges and opportunities for pediatric research in congenital heart defects and acquired heart disease.
Congenital Heart Defects (CHDs)
Accurately tracking congenital heart defects (CHDs) is the first step in preventing them and reducing their effect. Information from tracking systems provides a basis for research. Below is a summary of CDC’s CHD tracking and research work. Click here for the latest!
In Pediatric Heart Disease: Understanding Post-Fontan Risks, Improving Parental Bonding, and Video Telemedicine
Directly from the National Institutes of Health
September 14, 2020
During public health emergencies like COVID-19, science — and the process of turning observations into new therapies — must be translated faster than ever. Vast amounts of clinical data are being generated that could be used to advance research efforts focused on COVID-19. These datasets often become too large to share and the networks for data management are so dissimilar that they cannot be combined easily, creating roadblocks along the path to developing new treatments. With no standardized way to collect and harmonize all this data being generated, there is an urgent need for a COVID-19 analytics platform that can turn all this data into new knowledge that can speed research efforts across the country. Making data more meaningful, open and accessible is a key goal in NCATS’ efforts to improve translational science and advance research across many diseases. An effort called the National COVID Cohort Collaborative, or N3C, is building a centralized national data resource — the NCATS N3C Data Enclave — that the research community can use to study COVID-19 and identify potential treatments as the pandemic continues to evolve. Specifically, the N3C will enable the rapid collection and analysis of clinical, laboratory and diagnostic data from hospitals and health care plans. If successful, this approach will be applicable to other research questions and may serve as a model for addressing future public health emergencies.