Literature DB >> 31385565

Enhancing efficiency and scientific impact of a clinical trials network: the Pediatric Heart Network Integrated CARdiac Data and Outcomes (iCARD) Collaborative.

Sara K Pasquali1, Jonathan R Kaltman2, J William Gaynor3, Brian W McCrindle4, Jane W Newburger5, Brett R Anderson6, Mark A Scheurer7, Nelangi M Pinto8, Jeffrey B Anderson9, Matthew E Oster10, Jeffrey P Jacobs11, Bradley S Marino12, Carlos M Mery13, Gail D Pearson2.   

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.

Entities:  

Keywords:  CHD; database; outcomes

Mesh：

Year:  2019        PMID： 31385565      PMCID： PMC6980390          DOI： 10.1017/S104795111900163X

Source DB:  PubMed          Journal:  Cardiol Young        ISSN： 1047-9511            Impact factor:   1.093


  25 in total

1.  Design and initial results of a programme for routine standardised longitudinal follow-up after congenital heart surgery.

Authors:  Sara K Pasquali; Chitra Ravishankar; Jennifer C Romano; Kristin Kane; Suzanne Viers; Andrea Kennedy; Nancy Burnham; Ray Lowery; Karen Uzark; Lauren Retzloff; Jonathon J Rome; Joseph W Rossano; John R Charpie; Thomas L Spray; Michael G Gaies; Richard G Ohye; J William Gaynor
Journal:  Cardiol Young       Date:  2016-12       Impact factor: 1.093

2.  Cardiac Networks United: an integrated paediatric and congenital cardiovascular research and improvement network.

Authors:  Michael Gaies; Jeffrey Anderson; Alaina Kipps; Angela Lorts; Nicolas Madsen; Bradley Marino; John M Costello; David Brown; Jeffrey P Jacobs; David Kasnic; Stacey Lihn; Carole Lannon; Peter Margolis; Gail D Pearson; Jonathan Kaltman; John R Charpie; Andrew N Redington; Sara K Pasquali
Journal:  Cardiol Young       Date:  2018-12-20       Impact factor: 1.093

3.  Lessons learned from a pediatric clinical trial: the Pediatric Heart Network angiotensin-converting enzyme inhibition in mitral regurgitation study.

Authors:  Jennifer S Li; Steven D Colan; Lynn A Sleeper; Jane W Newburger; Victoria L Pemberton; Andrew M Atz; Meryl S Cohen; Fraser Golding; Gloria L Klein; Ronald V Lacro; Elizabeth Radojewski; Marc E Richmond; L Luann Minich
Journal:  Am Heart J       Date:  2011-02       Impact factor: 4.749

4.  Linking clinical registry data with administrative data using indirect identifiers: implementation and validation in the congenital heart surgery population.

Authors:  Sara K Pasquali; Jeffrey P Jacobs; Gregory J Shook; Sean M O'Brien; Matthew Hall; Marshall L Jacobs; Karl F Welke; J William Gaynor; Eric D Peterson; Samir S Shah; Jennifer S Li
Journal:  Am Heart J       Date:  2010-12       Impact factor: 4.749

5.  Hospital Costs Related to Early Extubation After Infant Cardiac Surgery.

Authors:  Kimberly E McHugh; William T Mahle; Matthew A Hall; Mark A Scheurer; Michael-Alice Moga; John Triedman; Susan C Nicolson; Venugopal Amula; David S Cooper; Marcus Schamberger; Michael Wolf; Lara Shekerdemian; Kristin M Burns; Kathleen E Ash; Dustin M Hipp; Sara K Pasquali
Journal:  Ann Thorac Surg       Date:  2018-11-17       Impact factor: 4.330

6.  Collaborative quality improvement in the cardiac intensive care unit: development of the Paediatric Cardiac Critical Care Consortium (PC4).

Authors:  Michael Gaies; David S Cooper; Sarah Tabbutt; Steven M Schwartz; Nancy Ghanayem; Nikhil K Chanani; John M Costello; Ravi R Thiagarajan; Peter C Laussen; Lara S Shekerdemian; Janet E Donohue; Gina M Willis; J William Gaynor; Jeffrey P Jacobs; Richard G Ohye; John R Charpie; Sara K Pasquali; Mark A Scheurer
Journal:  Cardiol Young       Date:  2014-08-28       Impact factor: 1.093

7.  Introduction--databases and the assessment of complications associated with the treatment of patients with congenital cardiac disease.

Authors:  Jeffrey P Jacobs
Journal:  Cardiol Young       Date:  2008-12       Impact factor: 1.093

8.  Report of the National Heart, Lung, and Blood Institute Working Group: An Integrated Network for Congenital Heart Disease Research.

Authors:  Sara K Pasquali; Jeffrey P Jacobs; Gregory K Farber; David Bertoch; Elizabeth D Blume; Kristin M Burns; Robert Campbell; Anthony C Chang; Wendy K Chung; Tiffany Riehle-Colarusso; Lesley H Curtis; Christopher B Forrest; William J Gaynor; Michael G Gaies; Alan S Go; Paul Henchey; Gerard R Martin; Gail Pearson; Victoria L Pemberton; Steven M Schwartz; Robert Vincent; Jonathan R Kaltman
Journal:  Circulation       Date:  2016-04-05       Impact factor: 29.690

9.  Utilizing a Collaborative Learning Model to Promote Early Extubation Following Infant Heart Surgery.

Authors:  William T Mahle; Susan C Nicolson; Danielle Hollenbeck-Pringle; Michael G Gaies; Madolin K Witte; Eva K Lee; Michelle Goldsworthy; Paul C Stark; Kristin M Burns; Mark A Scheurer; David S Cooper; Ravi Thiagarajan; V Ben Sivarajan; Steven D Colan; Marcus S Schamberger; Lara S Shekerdemian
Journal:  Pediatr Crit Care Med       Date:  2016-10       Impact factor: 3.624

Review 10.  Managing, analysing, and integrating big data in medical bioinformatics: open problems and future perspectives.

Authors:  Ivan Merelli; Horacio Pérez-Sánchez; Sandra Gesing; Daniele D'Agostino
Journal:  Biomed Res Int       Date:  2014-09-01       Impact factor: 3.411
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