Data Requests
Most clinical research studies involve requests for patient data, either to identify patients with a particular diagnosis or to obtain additional information about a group of patients. Obtaining this information, as well as maintaining the systems which are used to obtain this information, can be time consuming and usually requires special expertise. Commitment of any resources toward meeting these data requests is problematic in an academic environment in that it is unfair to expect the holders of the information to simply donate or volunteer their time to obtain and provide that information, especially since this represents time away from the responsibilities for which they are being employed. Charging investigators for these services is also problematic since the data request needs often occur early in the project, perhaps even at the feasibility assessment stage, and typically before any specific funding source is identified.
One of the main purposes is to provide the tools necessary for clinical investigators to meet many of their preliminary data request needs themselves. Aggregate information such as counts of patients meeting certain selection criteria can be easily obtained, allowing both feasibility assessments as well as rudimentary data mining capabilities.
However, no generic interface will be able to meet all data request needs. Specialty search design and execution services are available, to a limited extent. A data request form (download pdf form) must be completed, appropriately authorized, and submitted. Requests will be handled as resources are identified to meet them. Fees for this service are initially being waived, but will be instituted over time as the online searching capabilities are enhanced. Contact john.sinard@yale.edu with specific questions about data request services.
