Overview and experience of the YODA Project with clinical trial data sharing after 5 years

Research output: Contribution to journalArticle

Authors

  • Joseph S Ross
  • Joanne Waldstreicher
  • Stephen Bamford
  • Jesse A Berlin
  • Karla Childers
  • Nihar R Desai
  • Ginger Gamble
  • Cary P Gross
  • Richard Kuntz
  • Peter Lins
  • Sandra A Morris
  • Jessica D Ritchie
  • Harlan M Krumholz

Colleges, School and Institutes

External organisations

  • Center for Outcomes Research and Evaluation, Yale-New Haven Hospital, New Haven, CT, USA.
  • 1] Department of Pediatrics, Rutgers Robert Wood Johnson Medical School, New Brunswick, New Jersey, USA. [2] Child Health Institute of New Jersey, Rutgers Robert Wood Johnson Medical School, New Brunswick, New Jersey, USA.
  • Janssen Pharmaceutical Companies of Johnson & Johnson, High Wycombe, UK.
  • Section of Cardiovascular Medicine, Department of Medicine, Yale School of Medicine, New Haven, CT, USA.
  • Cancer Outcomes, Public Policy, and Effectiveness Research (COPPER) Center and Yale Cancer Center, Yale School of Medicine, New Haven, CT, USA.
  • Medtronic, Inc., Minneapolis, MN, USA.

Abstract

The Yale University Open Data Access (YODA) Project has facilitated access to clinical trial data since 2013. The purpose of this article is to provide an overview of the Project, describe key decisions that were made when establishing data sharing policies, and suggest how our experience and the experiences of our first two data generator partners, Medtronic, Inc. and Johnson & Johnson, can be used to enhance other ongoing or future initiatives.

Details

Original languageEnglish
Article number180268
JournalScientific Data
Volume5
Publication statusPublished - 27 Nov 2018