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

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

Organization: Weill Medical College of Cornell University

Principal Investigator: Rainu Kaushal, MD, MPH

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: * $6,999,999

Year Awarded: 2013

Project Period: * 1.5 Years

Project Summary:

The New York City Clinical Data Research Network (NYC-CDRN) will bring together a total of 22 organizations across seven systems in the nation’s most populous and diverse region. These organizations are already pursuing data sharing and patient-centered clinical research, individually and collaboratively. The NYC-CDRN will be a network building on the strengths of and support from each participating organization, sharing capabilities across organizations, and facilitating coordinated and patient-centered clinical research within and across CDRNs. The NYC-CDRN will include complete, comprehensive, and longitudinal data for at least 2.5 million patients, and potentially as many as 6 million patients. The NYC- CDRN has several distinguishing features, including prominent leadership roles for patients, expertise in community engagement, a setting in the most diverse city in the nation, support from state government, participating clinical organizations with decades of research experience including patient-centered comparative effectiveness research (CER), newer partners with innovative technologies, strong informatics expertise, existing clinical information exchange and interoperability, privacy and security expertise, and membership organizations that can effectively convene multiple stakeholders.

The NYC-CDRN will build on the six existing Clinical and Translational Science Award Centers at the medical schools and universities in New York City (Weill Cornell Medical College, College of Physicians and Surgeons at Columbia University, Icahn School of Medicine at Mount Sinai, NYU School of Medicine, Albert Einstein College of Medicine, and Rockefeller University), which are already pursuing collaborative research, data sharing, and patient engagement. The NYC-CDRN will also include the four associated medical centers (New York-Presbyterian Hospital, Mount Sinai Health System, NYU Langone Medical Center, and Montefiore Medical Center), five organizations for patient engagement (Center for Medical Consumers, Consumer Reports, American Diabetes Association, New York Academy of Medicine’s DASH initiative for obesity, and Cystic Fibrosis Foundation), one practice-based research network of Federally Qualified Health Centers (Clinical Directors Network), one genome center (New York Genome Center), one research support organization (Biomedical Research Alliance of New York), and the new Cornell Tech Campus (which includes a focus on developing new technologies to capture patient health information). The NYC-CDRN has strong support from the New York State Department of Health and builds on infrastructure established by two New York State–supported health information exchanges (Healthix and the Bronx Regional Health Information Organization [RHIO]).

The NYC-CDRN will include clinical, patient-reported, patient-generated, bio-specimen, claims, registry, and study-specific data on an unselected population of patients, approximating 100% of the patients who receive health care at the participating institutions, and reflecting the full diversity of people living in the New York City region. The NYC-CDRN will develop three cohorts for patients with diabetes, obesity, and cystic fibrosis as well as fully partner with patients and clinicians through disease-specific community workgroups. The involved personnel have expertise in informatics, CER, patient recruitment and engagement, human subjects protection, ethics, privacy and security, randomization techniques, and bio-banking. Strong health system leadership support for data sharing is in place, including from clinical leaders committed to developing learning healthcare systems (LHS) by embedding research activities into the provision of health care. The early and ongoing involvement of patients and patient organizations is key to the success of the NYC-CDRN, and our past experiences with successfully partnering with patients foreshadow similar successes to come. Finally, this project enjoys the strong support of the New York State Department of Health, which has invested over $400 million in health information technology infrastructure for the state with goals that include facilitating data sharing for clinical purposes and fostering patient-centered clinical research.

If awarded, this Cooperative Agreement has the potential to fundamentally restructure the research landscape in one of the nation’s largest and most diverse urban centers, to advance sustainable, scalable paradigms for patient-oriented research, and to support national research data network efforts.

*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.