Recruitment

Research Databases

NIH - All of Us

The All of Us Research Program includes a database that works to improve health care through research.  All of Us is building a diverse database that can inform thousands of studies on a variety of health conditions.

To find out more about All of Us and what makes this research database different you can go to:

https://allofus.nih.gov/about/program-overview/what-makes-all-us-different

To contact All of Us you can go to:

 https://allofus.nih.gov/about/contact-us

 

New York State Statewide Planning and Research Cooperative System (SPARCS)

SPARCS is a comprehensive all payer data reporting system established in 1979 as a result of cooperation between the healthcare industry and government. The system was initially created to collect information on discharges from hospitals.

SPARCS currently collects patient-level detail on patient characteristics, diagnoses and treatments, services, and charges for each hospital inpatient stay and outpatient (ambulatory surgery, emergency department, and outpatient services) visit; and each ambulatory surgery and outpatient services visit to a hospital extension clinic and diagnostic and treatment center licensed to provide ambulatory surgery services.

This github tool can be used to query SPARCS data.

See this video on how to use the tool.

For questions/comments related to:

SPARCS data submission or compliance reports: sparcs.submissions@health.ny.gov
SPARCS data use, data access, statistics reports:https://sparcssupport.zendesk.com/hc/en-us

 

TriNetX

TriNetX is a research network combining Stony Brook’s Electronic Medical Record data with the data of over 110 other Health Institutions. Researchers can use TNX to query either Stony Brook’s data alone, or in combination with other provider data via the other Research Networks.

Please review the documents below for example text to assist in preparing  protocols using TriNetX. Please be aware that researchers are ultimately responsible for the accuracy of their protocol language, so review carefully in the context of your planned research.  The documents below and additional resources on TriNetX can be found https://rci.stonybrook.edu/trinetx/documentation

• TNX Sample Data File

• Sensitive terms restricted to protect PHI in datasets (v.18May2021)

• HIPAA waiver template for recruitment (v.25Oct2023)

• Protocol Template – Retrospective Chart Review Using TNX (v.30Sep2021) 

• Limited Dataset Exempt Protocol Template (v.23Oct2023)

For more information on how to use TriNetX, please visit their FAQs here.

 

Research Registries

Stony Brook Research Ripple Registry

The Stony Brook Research Ripple is a Subject Volunteer Registry of people who have indicated that they are interested in being contacted about research participation opportunities at Stony Brook for studies that may relate to their specific health, demographic, or interest profile. Information collected in the registry is voluntarily provided in a survey by those in the registry within the Ripple platform hosted by Ripple Science.

Study teams will be provided access by the Stony Brook Ripple administrator to only those people in the registry that may be eligible for a study based on the IRB-approved protocol’s eligibility criteria.

See this document for language to be used in IRB protocol.

Contact Melanie Keister for further questions regarding Ripple.

 

List of Registries from the National institute of Health

https://www.nih.gov/health-information/nih-clinical-research-trials-you/list-registries

 

ResearchMatch

ResearchMatch.org is a national electronic, web-based recruitment tool that was created through the Clinical & Translational Science Awards Consortium in 2009 and is maintained at Vanderbilt University. There is no cost for researchers at Stony Brook University to use ResearchMatch for the purposes of conducting recruitment feasibility analysis or participant recruitment. This national registry provides a secure, web-based approach to address a key barrier to advancing research: participant recruitment.

To use this recruitment tool, Researchers are required to submit individual requests for approval by the Stony Brook IRB.

Please review this document for instructions on how to use ResearchMatch as well as guidelines and required language.