NYU Langone’s Clinical and Translational Science Institute provides researchers with access to a variety of data sources to identify potential research participants.

DataCore

DataCore is an institutional resource that provides a variety of research data services, which include querying the electronic health records of patients seen by NYU Langone healthcare providers to identify participants for research studies. Data is available on a variety of patient characteristics, including demographics, behaviors (such as smoking), vital signs, labs, procedures, medications, diagnoses, and problem lists.

Free-text documentation can also be used to identify potential study cohorts. Pattern matching approaches as well as more sophisticated natural language processing methods are available to mine free-text sources. Projects that require processing of free text generally require more substantial resource allocation to complete, including both analyst and developer time, as well as time allocated by someone from the study team to serve as a content expert who validates results generated by the technical work.

DataCore provides researchers attempting to find research participants with three types of data-related services. These include:

• general estimates of patients that meet eligibility criteria
• lists of patients to be used for recruitment purposes
• the ability to send study-related messages to patients at NYU Health via the MyChart online patient portal

No Institutional Review Board (IRB) approval is necessary for researchers to ask DataCore to provide general estimates of patients that meet specific eligibility criteria. These estimates are provided in a de-identified, aggregated format and can be used in grant applications to justify enrollment targets or for general study planning purposes.

Researchers must have IRB approval to request lists of patients with identifiable protected health information, such as contact information or information about upcoming appointments, to be used for research recruitment purposes.

Using DataCore to Message Study Participants via MyChart

Researchers must also have IRB approval to allow DataCore to provide your study team with the ability to send study-related messages to patients within Epic who have an active MyChart account. These messages allow patients the ability to respond if they are interested in potentially participating in a study. Not all studies use this functionality, and there are some policies to keep in mind when recruiting patients and sending messages. For example, study teams are not allowed to recruit a patient more than twice within the same month. Any study-related messages sent to patients via MyChart must undergo IRB review and approval.

Using Slicer Dicer to Identify Participants

In addition to these three services, Slicer Dicer is a self-service cohort exploration tool embedded in Epic that is available to researchers. This tool allows researchers to identify patients based on criteria entered into the user interface without needing to write code. The user interface displays counts of patients that meet specified criteria and allows for these aggregate counts to be displayed in several ways. For example, one can see counts of patients broken down using patient characteristics like age groupings, gender, ethnicity, and others. Slicer Dicer includes a derived set of patient characteristics based on the Centers for Disease Control and Prevention’s Social Vulnerability Index.

If IRB approval is obtained, researchers can also use Slicer Dicer to identify a cohort of interest and request the list of patients with contact information to be used for trial recruitment.

Researchers may request a DataCore service via an online form (login required). If you have any questions or need assistance with DataCore services, contact the DataCore liaison at datacore@nyulangone.org. Information gathered from the request form, as well as from discussions with the DataCore team to refine the request, will be used to provide an estimate of the effort involved for a particular project. Please note that DataCore charges fees for some services.

INSIGHT Clinical Research Network

The INSIGHT Clinical Research Network brings together data from the five top academic medical centers in New York City. Millions of patient records from the greater New York City area are represented in the network, which provides various datasets and services to support research. Currently, administrative and clinical data are available.

The database is helpful during the planning stages of a study, the grant application process, or recruiting patients into open clinical trials and health research studies. Researchers can submit requests to the INSIGHT Clinical Research Network for secondary data analysis or to invite patients to participate in specific clinical trials and health research studies.

There is no fee for pre-research aggregate queries (from the central database). Investigators just need to specify the criteria for the cohort on which they are seeking a count. Queries can be run for demographics, international classification of disease (ICD) codes (ICD-9 and some ICD-10 codes), and procedure codes.

There is a cost to obtain datasets, depending on the data elements involved, number of queries, and whether it requires a query to be distributed to research sites. For more information about requesting information from the INSIGHT Clinical Research Network, contact insightcrn@med.cornell.edu.

ResearchMatch

ResearchMatch is an online tool designed to link people who are trying to find research studies and researchers who are looking for research participants. Researchers can use the registry to search the non-identifiable profiles (such as age, gender, race, health status, and medications) of potential volunteers from across the country. A researcher may access the registry to conduct a feasibility search, which enables them to view aggregate data in order to generate a hypothesis or explore recruitment potential for a study, or to recruit participants for an IRB-approved study. To sign up, go to the website and register for researcher feasibility access. To use the registry to recruit for a specific study you must obtain IRB approval.

There is no fee to use ResearchMatch. For more information, contact the NYU ResearchMatch liaisons at nyuresearchmatch@nyulangone.org.