SEER-Medicaid: Requirements of Investigators Following Receipt of the Data

Investigators who have received the SEER-Medicaid data must abide by the policies established by NCI and the SEER program. These include the following:

• Researchers must send a copy of any manuscript or book chapter via the SEER-Medicaid request system prior to submitting it to a journal for review. This review is to ensure the confidentiality of patients and providers in SEER areas and that the manuscript topic matches the approved project. The review is not intended for the purpose of assessing the scientific merit of a manuscript. Researchers are not required to submit copies of meeting abstracts, power point presentations or dissertations for review. However, all presentations and abstracts using SEER-Medicaid data must comply with requirements about cell sizes, mapping and protection of patients and providers as described on the SEER-Medicaid DUA. The SEER-Medicaid linked data cell size suppression policy detailed in the SEER-Medicaid DUA is the same as the CMS cell size policy.
• NCI would appreciate the inclusion of the following acknowledgment in any publication or presentations using SEER-Medicaid linked data:

  "This study used the linked SEER-Medicaid database. The interpretation and reporting of these data are the sole responsibility of the authors. The authors acknowledge the efforts of the National Cancer Institute; the Centers for Medicare & Medicaid Services, Information Management Services (IMS), Inc.; and the Surveillance, Epidemiology, and End Results (SEER) Program tumor registries in the creation of the SEER-Medicaid database."

• Projects that use data from the California Cancer Registry are REQUIRED to include the acknowledgement statement posted on the California Cancer Registry website.
• If investigators want to use the data they have received for another project, they must submit a new application and appropriate paperwork for review according to the instructions.
• Investigators moving / changing institutions must contact NCI prior to the move for instructions on how to handle SEER-Medicaid data.
• Investigators may not provide SEER-Medicaid data to any other individual or investigator. Contact NCI to discuss arrangements for ordering an extra copy of the dataset.
• Investigators may not link variables from the SEER-Medicaid files to files other than SEER-Medicaid without the written consent from the applicable SEER registries.
• Investigators may not publish or present findings in which the number of cases in a cell is less than eleven. This policy is to eliminate the potential for re-identification of persons with cancer.