In order to balance the principles of access and confidentiality, the SCCCR has classified the release of data collected under Section 44-35-30, SC Code of Laws, 1996. This classification scheme aims to promote the use of accurate cancer data, provide equal treatment of data requesters and data providers, expedite the release and process, and encourage the release of the broad spectrum of data elements without compromising confidentiality. The data release classifications include two categories: unrestricted data and restricted (confidential) data. Procedures are set in place for the release of both classifications of data. The SCCCR Data Release Protocol explains these procedures.
Researchers requesting unrestricted or non-confidential data should first visit SCAN. The SCAN data query system allows users to generate tables and maps of South Carolina cancer incidence and mortality data. In addition, researchers can map cancer incidence data by going to the EPHT (Environmental Public Health Tracking) website. If the desired non-confidential data is not available on SCAN or the EPHT website, researchers should contact the SCCCR. Please include the following information in your request:
Restricted (confidential) data refers to data items that pertain to who, where, and when, or to aggregate data resulting in cell sizes less than 10 or rates based on fewer than 16 cases. For example, variables associated with patient, physician, & hospital or treatment center names, facility numbers or ids, and locations, etc.; and dates more specific than year. Address or location information more specific than county are considered confidential. Researchers requesting the use of restricted or confidential data items must complete the SCCCR Research Data Request Application and submit the application [and all supporting documents] to the SCCCR. For studies involving patient contact, please refer to the SCCCR Case Ascertainment/Recruitment Protocol for more detailed information regarding this process.
The application is then reviewed by the Surveillance Subcommittee of the Cancer Control Advisory Committee (CCACSS). The CCACSS forwards the documentation and its recommendation to the Department of Health and Environmental Control Institutional Review Board (DHEC IRB). Notification of approval will be provided after CCACSS review (at the time of DHEC IRB review).
In order for the data request process to proceed in the most expeditious manner, the SCCCR also requests that all researchers read the following document:Working with the South Carolina Central Cancer Registry (SCCCR): General Information and Best Practices for Students and Researchers.
Depending on the specific request, charges or fees may be applicable. Please refer to the PHSIS Schedule of Fees to see how fees are calculated. The SCCCR can provide an estimate of fees upon request.
For more information, please contact Stephanie Clugstone, MSPH, at (803) 898-0698.