At long last, the NAACCR Data Release Guidelines have been published, and are available here on the NAACCR Data Security & Confidentiality webpage: https://www.naaccr.org/wp-content/uploads/2024/04/NAACCR-Data-Release-Guidelines_v2024-03-22.pdf.
The NAACCR Data Release Guidelines outline considerations for central registries when releasing data, describe different types of data requests a central registry might receive from researchers, and provide recommended protocols for each request type prior to data release. In doing so, these guidelines aim to support central registries in ensuring that the data they collect and curate are used in accordance with high ethical standards and for the common good.
The Data Security & Confidentiality Workgroup (Research and Data Use Steering Committee) thanks the registries and other cancer surveillance professionals that have provided feedback on this document to date. Please contact Bozena Morawski (bmorawski@teamiha.org) and Lauren Maniscalco (lspiza@lsuhsc.edu) with questions and/or suggestions for expanded content. Additional resources published by the Data Security & Confidentiality Workgroup may be found here: https://www.naaccr.org/data-security-confidentiality-issues/.
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BOŻENA M. MORAWSKI, PHD, MPH
Epidemiologist
Idaho SEER Co-Principal Investigator
Cancer Data Registry of Idaho
PO Box 1278
Boise, ID 83701
tel: +1 (208) 489-1373 | fax: +1 (208) 338-7800
email:
bmorawski@teamiha.org------------------------------