Details and Information
Visit the NYC-CDRN Website
Organization: Weill Cornell Medicine
Principal Investigator: Rainu Kaushal, MD, MPH
Co-Principal Investigator(s): Jyoti Pathak, PhD
The New York City Clinical Data Research Network (NYC-CDRN) is an exciting initiative that offers researchers and other users access to large sets of research-ready, high-quality patient health and social data. Additionally, the NYC-CDRN provides important research services, such as patient enrollment, to advance and streamline important patient-centered research in New York City.
In Phase II of the project, the NYC-CDRN is enhancing its network and supporting a broad range of important, groundbreaking research. We continue to focus on the following goals:
- Advance policies to protect the privacy of individual patients, clinicians, and health systems
- Develop a high-functioning, sustainable governance structure
- Build a de-identified database with clinical data on 4.5 million patients and 60 million encounters
- Engage patients, caregivers, and clinicians in network governance and decision-making
- Embed research activities into healthcare delivery to minimize the burden on patients, clinicians, and health systems
The NYC-CDRN is already supporting 22 funded research studies on a variety of medical conditions, including diabetes, obesity, epilepsy, heart disease, chronic obstructive pulmonary disease, and behavioral disorders. We are also working on a PCORI-funded project with two other CDRNs, patients and health systems, data sets and tools to identify and predict patients with current or future preventable high healthcare use using information from a variety of sources, including patients’ medical records, health plans’ records, census surveys, and neighborhood surveys.
We are also focused on expanding our de-identified central research databases to incorporate a host of new data sources, including Medicaid data and social determinants of health. By expanding the breadth of our database, we hope to create a more complete picture of patients’ health and social issues, as well as support an even broader scope of research studies and clinical trials.
We continue to engage patients, caregivers, advocates, and clinicians to make sure that our processes and systems are as efficient and streamlined as possible. We always maintain the security and privacy of our data and consistently take into consideration the concerns and needs of our key constituents. Researchers, clinicians, and patients can access resources the NYC-CDRN offers and learn more about them on our website. You can follow NYC-CDRN on Twitter.
Initial Network Use-Case
- High Prevalence Cohort Clinical Condition: Diabetes
- Rare Disorder Clinical Condition: Cystic Fibrosis (CF)
- Populations Covered by Initial Focus: Underserved, urban, rare disorders, children, geriatric, minority, disabled, other vulnerable populations