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J Am Med Inform Assoc. 2014 Jul-Aug;21(4):587-90. doi: 10.1136/amiajnl-2014-002764. Epub 2014 May 12.

Changing the research landscape: the New York City Clinical Data Research Network.

Author information

1
Weill Cornell Medical College, New York, New York, USA NewYork-Presbyterian, New York, New York, USA.
2
Columbia University, New York, New York, USA.
3
Icahn School of Medicine at Mount Sinai, New York, New York, USA.
4
New York Genome Center, New York, New York, USA.
5
Weill Cornell Medical College, New York, New York, USA.
6
New York University Langone Medical Center, New York, New York, USA.
7
Montefiore Medical Center/Albert Einstein College of Medicine, Bronx, New York, USA.
8
Healthix, New York, New York, USA.
9
NewYork-Presbyterian, New York, New York, USA.
10
Biomedical Research Alliance of New York Institutional Review Board, Lake Success, New York, USA.
11
Center for Medical Consumers, New York, New York, USA.
12
NewYork-Presbyterian, New York, New York, USA Columbia University, New York, New York, USA.
13
Bronx RHIO (Bronx Regional Informatics Center), Bronx, New York, USA.
14
Clinical Directors Network, New York, New York, USA The Rockefeller University, New York, New York, USA.

Abstract

The New York City Clinical Data Research Network (NYC-CDRN), funded by the Patient-Centered Outcomes Research Institute (PCORI), brings together 22 organizations including seven independent health systems to enable patient-centered clinical research, support a national network, and facilitate learning healthcare systems. The NYC-CDRN includes a robust, collaborative governance and organizational infrastructure, which takes advantage of its participants' experience, expertise, and history of collaboration. The technical design will employ an information model to document and manage the collection and transformation of clinical data, local institutional staging areas to transform and validate data, a centralized data processing facility to aggregate and share data, and use of common standards and tools. We strive to ensure that our project is patient-centered; nurtures collaboration among all stakeholders; develops scalable solutions facilitating growth and connections; chooses simple, elegant solutions wherever possible; and explores ways to streamline the administrative and regulatory approval process across sites.

KEYWORDS:

PCORI; PCORnet; clinical data; electronic health record; research data; research network

PMID:
24821739
PMCID:
PMC4078297
DOI:
10.1136/amiajnl-2014-002764
[Indexed for MEDLINE]
Free PMC Article

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