New York City Clinical Data Research Network (NYC-CDRN) – Phase I & II

Network Name: New York City Clinical Data Research Network (NYC-CDRN)

Organization: Weill Medical College of Cornell University

Principal Investigator: Rainu Kaushal, MD, MPH

The New York City Clinical Data Research Network (NYC-CDRN) was founded with support from PCORI to join its PCORnet program. Our mission is to create an accessible, sustainable, scalable clinical data network to facilitate patient-centered research, learning healthcare systems and the national research network PCORnet. We have focused our efforts on the following:

  • Creating thoughtful privacy policies that protect the identities of individual patients, clinicians, and health systems
  • Establishing a de-identified database with clinical data on at least 1 million New Yorkers
  • Engaging patients, caregivers, and clinicians in network governance and decision making
  • Embedding research activities in the delivery of health care to minimize the burden on patients, clinicians, and health systems
  • Developing a high-functioning, sustainable governance structure

The NYC-CDRN brings together 22 institutions—including health systems, medical colleges, patient engagement organizations, research institutions, health information exchanges, and government agencies—that have agreed to share data, develop common tools and services, and support patient-centered collaborative research. Participating institutions include academic medical centers and a practice-based research network of federally qualified health centers.

In Phase II we will build on our strong Phase I progress to create a network that can facilitate patient-centered research and improve health and healthcare delivery. Our initial focus is on three important conditions, namely diabetes, obesity, and cystic fibrosis. To help researchers compare and investigate new treatments, we have built a secure database for medical research at the New York Genome Center that protects the identities of patients and physicians. We are also able to access rich data sources at each of our institutions. Our network will continue to meet the highest standards of privacy and security by consulting with our central institutional review board at the Biomedical Research Alliance of New York, and with other security and privacy experts.

We will continue to engage patients and clinicians to generate meaningful research topics and questions, make research projects more patient and clinician friendly, and identify ways to share the results of research widely to inform medical decisions. We will also continue to collaborate with local and national researchers, other clinical data and patient-powered research networks, and the PCORnet community. The NYC-CDRN is emerging as a trusted resource and participant in PCORnet, which is a transformative initiative to enable research that will find answers to save lives.

Clinical condition for high prevalence cohort: Diabetes

Clinical condition for rare disorder cohort: Cystic fibrosis

Populations covered by network: Underserved, urban, rare disorders, children, geriatric, minority, disabled, other vulnerable populations

State: New York

Requested Project Budget: Phase I: $6,999,999; Phase II: * $8,565,264

Year Awarded: Phase I: 2013; Phase II: 2015

Project Period: Phase I: 1.5 Years; Phase II: * 3 years

*All proposed projects, including requested budgets and project periods, are approved subject to a programmatic and budget review by PCORI staff and the negotiation of a formal award contract.