title: Changing the research landscape: the New York City Clinical Data Research Network.
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.
authors.affiliation: Weill Cornell Medical College, New York, New York, USA NewYork-Presbyterian, New York, New York, USA.
authors.forename: Rainu
authors.initials: R
authors.lastname: Kaushal
authors.affiliation: Columbia University, New York, New York, USA.
authors.forename: George
authors.initials: G
authors.lastname: Hripcsak
authors.affiliation: Icahn School of Medicine at Mount Sinai, New York, New York, USA.
authors.forename: Deborah D
authors.initials: DD
authors.lastname: Ascheim
authors.affiliation: New York Genome Center, New York, New York, USA.
authors.forename: Toby
authors.initials: T
authors.lastname: Bloom
authors.affiliation: Weill Cornell Medical College, New York, New York, USA.
authors.forename: Thomas R
authors.initials: TR
authors.lastname: Campion
authors.affiliation: New York University Langone Medical Center, New York, New York, USA.
authors.forename: Arthur L
authors.initials: AL
authors.lastname: Caplan
authors.affiliation: Montefiore Medical Center/Albert Einstein College of Medicine, Bronx, New York, USA.
authors.forename: Brian P
authors.initials: BP
authors.lastname: Currie
authors.affiliation: Healthix, New York, New York, USA.
authors.forename: Thomas
authors.initials: T
authors.lastname: Check
authors.affiliation: NewYork-Presbyterian, New York, New York, USA.
authors.forename: Emme Levin
authors.initials: EL
authors.lastname: Deland
authors.affiliation: New York University Langone Medical Center, New York, New York, USA.
authors.forename: Marc N
authors.initials: MN
authors.lastname: Gourevitch
authors.affiliation: Biomedical Research Alliance of New York Institutional Review Board, Lake Success, New York, USA.
authors.forename: Raffaella
authors.initials: R
authors.lastname: Hart
authors.affiliation: Icahn School of Medicine at Mount Sinai, New York, New York, USA.
authors.forename: Carol R
authors.initials: CR
authors.lastname: Horowitz
authors.affiliation: NewYork-Presbyterian, New York, New York, USA.
authors.forename: Isaac
authors.initials: I
authors.lastname: Kastenbaum
authors.affiliation: Center for Medical Consumers, New York, New York, USA.
authors.forename: Arthur Aaron
authors.initials: AA
authors.lastname: Levin
authors.affiliation: Weill Cornell Medical College, New York, New York, USA.
authors.forename: Alexander F H
authors.initials: AF
authors.lastname: Low
authors.affiliation: Montefiore Medical Center/Albert Einstein College of Medicine, Bronx, New York, USA.
authors.forename: Paul
authors.initials: P
authors.lastname: Meissner
authors.affiliation: Montefiore Medical Center/Albert Einstein College of Medicine, Bronx, New York, USA.
authors.forename: Parsa
authors.initials: P
authors.lastname: Mirhaji
authors.affiliation: NewYork-Presbyterian, New York, New York, USA Columbia University, New York, New York, USA.
authors.forename: Harold A
authors.initials: HA
authors.lastname: Pincus
authors.affiliation: Bronx RHIO (Bronx Regional Informatics Center), Bronx, New York, USA.
authors.forename: Charles
authors.initials: C
authors.lastname: Scaglione
authors.affiliation: New York University Langone Medical Center, New York, New York, USA.
authors.forename: Donna
authors.initials: D
authors.lastname: Shelley
authors.affiliation: Clinical Directors Network, New York, New York, USA The Rockefeller University, New York, New York, USA.
authors.forename: Jonathan N
authors.initials: JN
authors.lastname: Tobin
mesh_terms: D003195:Computer Communication Networks / Q000458:organization & administration*; D057286:Electronic Health Records / Q000458:organization & administration*; D006801:Humans; D033181:Information Dissemination; D009519:New York City; D017063:Outcome Assessment, Health Care / Q000458:organization & administration*; D018802:Patient-Centered Care
keywords: PCORI; PCORnet; clinical data; electronic health record; research data; research network