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Data Use and Confidentiality Task Force Report (NAACCR task force), December 1999

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Available in hard copy from NAACCR, an ad hoc NAACCR Committee report from 1999 examines data use and confidentiality issues for cancer registries. It gives an overview of definitions and issues related to aggregate data, public use files, record linkages, access to patients, and Canadian and US oversight and policy. While many of the basic principles of protection of confidentiality are still valid, this report predates HIPAA. The Confidentiality subcommittee of the Data Use and Research Committee is currently updating this report, including removing the outdated materials such as selected state and provincial rules, the SEER public use file agreement, NAACCR public use recommendations, and a sample patient access policy.