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Intro

The New York City Clinical Data Research Network (NYC-CDRN) was founded with support from the Patient-Centered Outcomes Research Institute (PCORI) to join its PCORnet program. Its mission is to create an accessible, sustainable, scalable clinical data network to facilitate patient-centered research, learning healthcare systems and support a national research network – PCORnet – which connects several such networks.

Institutions

The NYC-CDRN brings together over 20 organizations, including 6 independent health systems contributing data to a central de-identified data repository including the Clinical Directors Network (a practice based research network of Federally Qualified Health Centers), Columbia University College of Physicians and Surgeons, Montefiore Medical Center and Albert Einstein College of Medicine, Mount Sinai Health System and the Icahn School of Medicine, New York-Presbyterian Hospital, New York University Langone Medical Center and New York University School of Medicine, and Weill Cornell Medicine.

Data

The NYC-CDRN makes available various datasets and services to support research. It has created a secure de-identified data repository at its Informatics Center, housed at the New York Genome Center, consisting of complete, longitudinal clinical records for 4.5 million unique patients and 60 million encounters. Current available data include administrative and clinical data and the database will be continuously expanded to include other data sources, such as claims, social determinants of health, patient reported outcomes and patient generated data. The NYC-CDRN can also make available other clinical or administrative data sets from the rich data sources at its participating institutions. It meets the highest standards of privacy and security and has received certification from a national expert that it meets strong federal standards for data privacy and security.

Other Services

The NYC-CDRN also provides various services to support multi-site research projects. It helps investigators identify and contact fellow investigators at participating health systems to enable collaboration. It also offers expedited administrative and regulatory processes, including central IRB services at the Biomedical Research Alliance of New York (BRANY). The NYC-CDRN facilitates contracting for multi-center studies using standardized agreements and works with sites to adopt standard processes for patient recruitment and consent.

The NYC-CDRN is committed to engaging patients and clinicians to generate meaningful research topics and questions, make research projects more patient and clinician-friendly and identify ways to widely disseminate research results to better inform medical decisions. It continually explores collaborations with local and national researchers, various stakeholders from across the industry, other data and research networks and the PCORnet community.