Enhancing Efficiency and Scientific Impact of a Clinical Trials Network: the Pediatric Heart Network Integrated CARdiac Data and Outcomes (iCARD) Collaborative

Overview

Journal Cardiol Young

Publisher Cambridge University Press

Specialties Cardiology & Vascular Diseases
Pediatrics

Date 2019 Aug 7

PMID 31385565

Citations 1

Authors

Sara K Pasquali

Jonathan R Kaltman

J William Gaynor

Brian W McCrindle

Jane W Newburger

Brett R Anderson

Mark A Scheurer

Nelangi M Pinto

Jeffrey B Anderson

Matthew E Oster

Jeffrey P Jacobs

Bradley S Marino

Carlos M Mery

Gail D Pearson

Affiliations

Soon will be listed here.

Abstract

Recent years have seen an exponential increase in the variety of healthcare data captured across numerous sources. However, mechanisms to leverage these data sources to support scientific investigation have remained limited. In 2013 the Pediatric Heart Network (PHN), funded by the National Heart, Lung, and Blood Institute, developed the Integrated CARdiac Data and Outcomes (iCARD) Collaborative with the goals of leveraging available data sources to aid in efficiently planning and conducting PHN studies; supporting integration of PHN data with other sources to foster novel research otherwise not possible; and mentoring young investigators in these areas. This review describes lessons learned through the development of iCARD, initial efforts and scientific output, challenges, and future directions. This information can aid in the use and optimisation of data integration methodologies across other research networks and organisations.

Citing Articles

The Quebec Congenital Heart Disease Registry: A Model of Prospective Databank to Facilitate Research in Congenital Cardiology.

Watelle L, Roy L, Lauzon-Schnitka J, Newell G, Dumas A, Nadeau A CJC Pediatr Congenit Heart Dis. 2024; 3(2):57-66.

PMID: 38774679 PMC: 11103037. DOI: 10.1016/j.cjcpc.2023.12.001.

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