The Congenital Cardiac Research Collaborative: Evolution of a Research Collaborative into a Registry and Beyond

Q: What is the clinical evidence from this study?

Study design: Review. Population: Congenital heart disease.

Q: What does this research mean for the field?

The Congenital Cardiac Research Collaborative has evolved into a 19-center longitudinal registry documenting clinical practice shifts, including an increase in neonatal tetralogy of Fallot PDA stenting from 4.9% to 43.4% alongside a decrease in surgical shunts from 42.1% to 14.8%. Novelty: ClaimNovelty.SYNTHESIS. Consensus alignment: ConsensusAlignment.NEUTRAL.

Jeffrey D. Zampi; Rachel Weber; Niklas Gerhart; Sharon Mazzocco; Abigail Waldron; Sarosh Percy Batlivala; R. Allen Ligon; Yun Zhang; Christopher J. Petit; Andrew C. Glatz; Bryan H. Goldstein; Athar Mahmood Qureshi; Courtney McCracken; Dana Boucek; Tacy E. Downing; Mark A. Law; Brian H. Morray; George T. Nicholson; Michael Liam O'Byrne; Surendranath Veeram Reddy; Juan Carlos Samayoa; Matthew C. Schwartz; Mina Vafaeezadeh; Nelangi M. Pinto

doi:10.32604/schd.2026.085263

Key result

The Congenital Cardiac Research Collaborative evolved into a 19-center registry showing neonatal tetralogy of Fallot PDA stenting rose from 4.9% to 43.4% while surgical shunts fell from 42.1% to 14.8%.

Why the study?

The Congenital Cardiac Research Collaborative aims to improve patient care in congenital heart disease through a large multicenter and multispecialty group of physician-scientists and outcomes researchers.

Key Points

To describe the organizational growth, mission, and strategic evolution of the Congenital Cardiac Research Collaborative (CCRC) from a retrospective multicenter initiative into a prospective longitudinal registry.
Narrative review detailing the collaborative's development from a 2-center project in 2013 to joining Cardiac Networks United (CNU) in 2020.
Summarized organizational principles centered on studying disease-defined cohorts across the lifespan rather than isolated procedural interventions.
Evaluated the integration of multidisciplinary specialists, parent advisory committees, and multicenter infrastructure across participating pediatric cardiology programs.
The network expanded from an initial 2-center study to 19 centers comprising more than 45 members and affiliates, transitioning its name from the Congenital Catheterization Research Collaborative to the Congenital Cardiac Research Collaborative.
The registry established infrastructure capable of capturing granular longitudinal data post-discharge and has served as the backbone for a national randomized clinical trial.

Structured PICO

P

Population

Pediatric and congenital heart disease patients across 19 United States centers tracked longitudinally in disease-based registry modules (including neonates with ductal-dependent pulmonary blood flow undergoing intervention within 30 days of life).

Limitations

Heterogeneity of congenital heart disease conditions and relative rarity of individual lesions limit scientific investigation
Retrospective multicenter data collection is subject to selection bias and lags behind rapid clinical innovation and practice evolution
Certain patient subsets, such as fetuses with severe congenital heart disease who die in utero or patients who do not receive or require intervention, may not be captured in the registry
Supplemental de novo data collection for specific research studies requires additional site-specific time and resources
Possibility of missing individual patient subsets who do not receive or require treatment (e.g., a fetus diagnosed with severe Ebstein's anomaly who dies in-utero prior to any intervention)
Not feasible to collect every data element on every patient or predict all data elements important for future research
Additional de novo data collection for specific studies can require extra time and site-specific resources

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Implication

This narrative review details the evolution of the Congenital Cardiac Research Collaborative from a retrospective research group into a 19-center prospective longitudinal registry that supports national clinical trials, long-term outcomes research, and real-time quality improvement in congenital heart disease.

Abstract

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Cite This Study

Zampi et al. (2026) conducted a review in Congenital heart disease. The Congenital Cardiac Research Collaborative evolved into a 19-center registry showing neonatal tetralogy of Fallot PDA stenting rose from 4.9% to 43.4% while surgical shunts fell from 42.1% to 14.8%.

synapsesocial.com/papers/6af0cd87afd0f3f56e51a205 https://doi.org/10.32604/schd.2026.085263

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The Congenital Cardiac Research Collaborative: Evolution of a Research Collaborative into a Registry and Beyond

Key Points

Structured PICO

Limitations

Ask about this paper

Implication

Abstract

Discussion

Cite This Study

The Congenital Cardiac Research Collaborative: Evolution of a Research Collaborative into a Registry and Beyond

Key Points

Structured PICO

Limitations

Ask about this paper

Implication

Abstract

Discussion

Cite This Study

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