Background: Accelerating Pace of Data
Outcomes for patients with pediatric and congenital cardiovascular disease have improved considerably over the past three decades. To better understand care practices and outcomes, substantial investments in data collection and analytics have been made, with an exponential increase in information captured across numerous sources.^1-3 These include data collected as a part of clinical registries, research and quality improvement networks, the electronic health record and newer devices and monitors.

Silos Limit Discovery and Advancement
While a variety of data sources are now widely available, their utility and return on investment to drive scientific discovery and improve care have been questioned.^1-3 A major reason for this is that our data, expertise and infrastructure largely remain in disconnected silos and are limited to isolated episodes of care. This siloed approach has several limitations:^1-3

• High costs: There is extensive redundancy with collection and analysis of overlapping and non-uniform data across multiple sources.
• Limited discovery: Lack of integration across data sources limits the types of questions we can answer and our ability to move beyond short term outcomes to addressing important issues across the lifespan.
• Limited translation: Mechanisms to translate scientific discovery to improvements in care are lacking, and there is a disconnect between research and quality improvement efforts.
• Few solutions: Collaboration across disciplines and areas of expertise (e.g., clinicians, data scientists, implementation experts) is rare in the current siloed structure, limiting creative solutions to address current challenges.

The lack of an integrated data network in the field has been identified by a recent National Heart, Lung, and Blood Institute (NHLBI) working group as a critical gap.³

Cardiac Networks United
To address these challenges, a series of cross-disciplinary stakeholder meetings were held in 2017 involving registry/research network leads, NHLBI officers, professional societies and foundations across the field, investigators, data science experts, congenital heart center executive leadership from around the country and patients and families.² As a result of these sessions, five founding organizations came together to form Cardiac Networks United with a shared vision to collaborate and integrate data and resources to accelerate discovery and improvements in care.² Figure 1 displays the vision and mission of Cardiac Networks United. Previous work by the Multi-Societal Database Committee, NHLBI Working Group on an Integrated Network for Congenital Heart Disease Research and the Pediatric Heart Network Integrated CARdiac Data and Outcomes (iCARD) Collaborative laid an important framework for these efforts.^2,3

Reach
The five founding networks are depicted in Figure 2, and capture data from more than 85 congenital heart centers, representing approximately two thirds of all US programs.² Importantly, these networks span multiple phases of care, bridging existing silos to better understand outcomes across the lifespan (Table 1). Cardiac Networks United also aims to expand to additional partners moving forward.

In addition to traditional clinical variables and registries, Cardiac Networks United is piloting integration with other types of data and emerging data sources including:

• The electronic health record
• Research datasets through collaboration with the Pediatric Heart Network and others⁴
• Genetic and biomarker data
• Maternal-fetal data
• Real-time physiologic data captured from monitors and devices
• Longitudinal patient reported outcomes data⁵

These efforts allow us to further expand the reach and impact of Cardiac Networks United.

Organizational Structure
The organizational structure includes a Data Core based within the University of Michigan Congenital Heart Center which fosters data integration and scientific efforts spanning multiple datasets.² There is also an Improvement Core based at Cincinnati Children's Hospital's James M. Anderson Center which provides expertise to facilitate translation of discovery into improvements in care.² The two Cores work together to couple research activities and improvement initiatives with the goal of expediting translation of discovery to tangible improvements in care. Cardiac Networks United is currently supported by institutional and philanthropic funding from the University of Michigan and Cincinnati Children's Hospital.

Initial Efforts
Multiple activities are ongoing to support the mission of Cardiac Networks United:²

• Standardized common data elements: To reduce redundant data capture, maintenance, analysis across networks.
• Shared regulatory/contracting practices: To support data sharing, streamline start-up of new studies and data capture.
• Collaborative research: To demonstrate integrated data can support novel science otherwise not possible.
• Shared improvement expertise: To promote translation of discovery to improvements in care.
• Scalability: To develop tools to support expansion to other networks and emerging data sources.

Areas of Focus
Several projects in both the research and improvement realms are planned or underway which integrate data and resources across the networks:²

• Preventing cardiac arrest
• Reducing chest tube duration
• Reducing post-operative length of stay
• Preventing ventricular assist device complications
• Improving single ventricle outcomes, with newest efforts focusing on Fontan and beyond
• Optimizing neurodevelopment
• Understanding peri-operative factors influencing longitudinal outcomes (e.g., survival, quality of life, neurodevelopment, etc.)

In summary, Cardiac Networks United aims to support broader collaboration across the field to accelerate discovery and improvements in care for patients and families impacted by pediatric and congenital cardiovascular disease. Additional information about ongoing activities and opportunities to get involved is available at cardiacnetworksunited.org and in our recently published white paper.² Cardiac Networks United will also be hosting a joint meeting in Ann Arbor, MI in November 2019 to foster continued collaboration and shared science across organizations.

Figure 1

Figure 2

Table 1: Data Collected Across 5 Founding Networks

Network	Data
Pediatric Cardiac Critical Care Consortium (PC4)	Cardiac ICU medical & surgical
Pediatric Acute Care Cardiology Collaborative (PAC3)	Inpatient ward
National Pediatric Cardiology Quality Improvement Collaborative (NPC-QIC)	Single ventricle disease
Advanced Cardiac Therapies Improving Outcomes Network (ACTION)	Pediatric heart failure & mechanical support
Cardiac Neurodevelopmental Outcomes Collaborative (CNOC)	Long-term neurodevelopment

References

1. Vener DF, Gaies M, Jacobs JP, Pasquali SK. Clinical databases and registries in congenital and pediatric cardiac surgery, cardiology, critical care, and anesthesiology worldwide. World J Pediatr Congenit Heart Surg 2017;8:77-87.
2. Gaies M, Anderson J, Kipps A, et al. Cardiac Networks United: an integrated paediatric and congenital cardiovascular research and improvement network. Cardiol Young 2018:1-8. [Epub ahead of print]
3. Pasquali SK, Jacobs JP, Farber GK, et al. Report of the National Heart, Lung, and Blood Institute Working Group: an integrated network for congenital heart disease research. Circulation 2016;133:1410-8.
4. Gaies M, Pasquali SK, Nicolson SC, et al. Sustainability of infant cardiac surgery early extubation practices after implementation and study. Ann Thorac Surg 2019;107:1427-33.
5. Pasquali SK, Ravishankar C, Romano JC, et al. Design and initial results of a programme for routine standardized longitudinal follow-up after congenital heart surgery. Cardiol Young 2016;26:1590-6.

Keywords: National Heart, Lung, and Blood Institute (U.S.), Research Personnel, Quality Improvement, Heart-Assist Devices, Leadership, Chest Tubes, Information Dissemination, Episode of Care, Quality of Life, Registries, Research, Electronic Health Records, Information Storage and Retrieval, Heart Arrest, Cardiovascular Diseases, Heart Diseases, Heart Defects, Congenital

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