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Biomedical Research, Clinical Practice and the Use of an Integrated Data Repository (IDR)

 

Authors: Maggie Massary 1 , Ketty Mobed 2 , Mark Weiner 1 , Marco Casale 3 , Davera Gabriel 4 , Prakash Lakshminarayanan 2 , Hillari Allen 2 , John Holmes 1 , Kevin Haynes 1 , Paul Norris 2 , Rob Wynden 2

 

1 University of Pennsylvania – Health System

2 University of California , San Francisco – Academic Research Systems

3 University of Rochester - Medical Center

4 University of California , Davis - Clinical & Translational Science Center

All listed authors are at institutions with current NIH-CTSA funding

 

 

Preface

 

The following 3-part article evolved out of the submission of a technical grant proposal ‘The CTSA Ontology Mapper and Discovery Suite: A Rules-Based Approach to Integrated Data Repository Deployment’ [1]. Many hours of collegial discussions and brain storming sessions convinced the authors, all housed within CTSA funded member institutions, that one manuscript on data discovery and the use of an integrated data repository (IDR) for biomedical research and clinical practice would not be sufficient to do this multi-faceted subject justice. Therefore, with overwhelming consensus, it was decided to present this complex topic in three distinct separate chapters: ‘The ABC and Ps of Biomedical Research’, ‘ The Lifecycle of Data Discovery and Data Request: The Case for an Integrated Data Repository’, and ‘The Archetype of an Integrated Data Repository Used by Practicing Clinicians at the Patient’s Bedside’.

 

Part 1 of the article defines the different arenas and flows of biomedical research and the steps that are necessary for an investigator to take. It also presents some hypothetical use cases in biomedical research and the potential different relationships that a researcher may have to the IDR. Part 2 describes how data currently is extracted and processed for research and how the future of data discovery, mining and aggregation is foreseen utilizing the IDR. The third article will discuss the archetype of the IDR and how it would interplay and facilitate the bedside practice of clinicians.