Data Requests2018-10-24T10:56:02-04:00

The Data Core is equipped to provide investigators with customizable data sets for their IRB approved studies at a pre-established cost.  A data analyst will work with the investigator to finalize the cohort definition, determine the variables to be included and format, and address any concerns that arise during the analysis phase.

  • Cohort inclusion/exclusion criteria
  • Variables of interest
  • Type of data (e.g. de-identified, limited, or identifiable)
  • Location of data storage
  • IRB documentation
All data requests require a completed purchase of services and an approved IRB (approval letter and questionnaire) or official notification from the IRB office that the project is Not-Human Subjects. Additionally, all requests require that the PI is up to date on HIPAA training and, for Limited Data Sets and Identifiable Data, has specified an approved location to store data.
  • De-identified data sets are non-aggregate patient/subject level data that do not contain dates other than year (e.g. 2017, 1999, etc.) and do not contain address information beyond three digit zip code prefixes (e.g. 462, 479, etc.)
  • Limited data sets require a Data Use Agreement (DUA) that is signed by the PI. They contain non-aggregate patient/subject level data and include dates and/or city, state, zip codes, and census tracts.
  • Identified data sets require a Data Agreement (DA) signed by the PI only and approval from each data source (i.e. health system) providing information. They contain non-aggregate patient/subject level data that includes Protected Health Information (PHI)
  • For more information, visit our Data Types, Agreements, and Hand-off page.
Depending on the type and complexity of data and requirements that are met at the time of request, once an analyst is assigned, initial data release can typically be provided within 60 days. Study time constraints will be taken into consideration.
After verification of data agreements, the data analyst will hand off the data in the agreed-upon and approved secure storage method. A data dictionary will be included with the data set.
Data can come from any of our sources depending on the type of data requested. Certain institutions have limitations around what identifiers can be handed off.  A data analyst will work with you to determine the ideal source of data.
There are various pricing tiers for Data Core analysts to extract data ranging from flat fees to percent of a full-time employee (FTE). Depending on the complexity of the project and amount of time it is expected to complete, a quote will be provided and purchase of services executed prior to data hand-off.

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