Building a Minnesota Congenital Heart Network. The Current Status of CHD. Leading cause of infant deaths in the US #1 cause of birth defect related deaths 1,000,000 CHD births worldwide Cost for surgical repair: >$2.2 billion/yr in US. Children’s Heart Foundation Fact Sheets. CHD Morbidity.
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Children’s Heart Foundation Fact Sheets
Quantity of Life Quality of Life
How do we define strategies
that decrease risk for morbidity?
Establish a collaborative multicenter multidisciplinary network to develop and implement clinical research proposals evaluating congenital heart disease management.
Network members represent all the clinical areas involved in CHD perioperative care: Cardiology, Anesthesiology, Perfusion, Critical Care Nursing, and Pharmacy. This type of multidisciplinary representation is ensuring that clinical research questions are asked with a multidisciplinary voice and have a greater impact on a broader spectrum of patient care.
Designing and analyzing CHD clinical trials presents many challenges due to the heterogeneous patient populations and the potential confounding of diverse management strategies. Appropriate utilization of and design for collecting data requires experienced biostatistical support to maximize the potential clinical implications of research findings. The MCHN is addressing these concerns by involving experienced and advanced biostatistical support at all levels of the clinical research design and analysis process.
The MCHN’s objective to collect and analyze clinical data generated during and after congenital heart surgery requires techniques for efficient and accurate data collection, sharing, and analysis. The bioinformatics core is essential for leveraging current informatic tools to facilitate MCHN CHD research initiatives.
Define the current perioperative environment.
Comprehensive collection of acute perioperative vital statistics
Overview of System Design. CHD-specific terms will be identified and used to supplement existing biomedical ontologies, for the annotation of CHD-specific metadata. Secure data exchange between interoperable CHD systems will be achieved using caGrid. An internal CHD datamart will be developed at each institution, which will be queried by the grid-enabled CHD data service. The two EHR systems and the Mayo Clinic CHD datamart already exist; the caGrid nodes and CHD data services are being developed through an award from the MN Partnership for Bioinformatics and Genomics.Multi-institutional Sharing of MCHN Data
Querying the MCHN Data Infrastructure. The hashed arrows show the query being distributed via the caGrid to each institutional CHD datamart. The open arrows show data being returned to the investigator. Existing caGrid applications may be used where appropriate (i.e. Statistical Toolbox).Accessing MCHN Data
Defining the perioperative inflammatory/stress response
To describe baseline adrenal function and the impact of congenital cardiac surgery on the hypothalamic-pituitary-adrenal axis.