Requesting Access to POC Data and Updating/Changing POC Data Requests

Extramural use of Patterns of Care data

1. Access to POC Data by Non-NCI investigators: Only participating SEER registry PI’s and their colleagues are cleared to analyze POC data, given the small cohort sizes. Registry colleagues may include students, fellows, staff, and other researchers who are formally collaborating with SEER registry PI’s on a study using POC data. In all cases, the SEER registry PI must be the guardian of the data and is responsible for ensuring the data are secure and accessed only by authorized personnel.

2. POC Data Requests: Authorized personnel should prepare a proposal for access to these data. The Protocol Summary can be no more than five pages and must use the Proposal for use of Patterns of Care data (PDF, 166 KB). Data requests must also include the Request form for POC data (PDF, 84 KB).

   References can be included, if relevant. The requesting investigator must also complete the POC Data Use Agreement (DUA) (PDF, 142 KB).

   If the study will involve a researcher not located at the SEER registry, the data request must include a signed letter from the SEER registry PI stating willingness to collaborate with the researcher and a commitment that the SEER registry PI will be responsible for ensuring security and appropriate access to all data.

   Once the data request is approved, the SEER registry PI and the colleagues who will be using the data (if any) should sign the data use agreement.

3. Institutional Review Board approval: The requesting investigator must provide documentation that their Institutional Review Board (IRB) has reviewed the proposed study and either approved it or found it be exempt.

4. Use of POC Data: POC data use authorization is project specific; the released data can be used only for the project specified in the data request proposal. Investigators may not provide POC data to any other individual or investigator. Investigators may not link POC data to other files except for area-based linkages (e.g., state-level characteristics).

5. Data Retention: Data is released for one year; SEER PI’s and their colleagues specified in the DUA can request additional one-year periods if the project is not complete for a maximum of five years. At the end of this period, all data must be destroyed and the SEER PI should email the POC contact attesting that the destruction is complete so the DUA can be closed.

6. Changes to POC Data Requests: To make changes to a previously approved POC data request, the requesting individual and SEER PI should submit a Data Change/Update Request form (PDF, 166 KB) to the NCI POC contact.

7. Manuscript Development: All manuscripts using POC data must be submitted to the NCI POC contact (Dr. Michael Halpern) for review before they can be submitted for publication. Please note that all cells presented in a manuscript must include at least 11 cases or should be hidden. Information on abstracts and meeting presentations involving POC data must also be submitted to NCI but does not require review and can be submitted after the presentation.

   NCI would appreciate the inclusion of the following acknowledgment in any publication or presentations using POC data: "This study used data from the NCI Patterns of Care (POC) studies. The interpretation and reporting of these data are the sole responsibility of the authors. The authors acknowledge the efforts of the National Cancer Institute; Information Management Services (IMS), Inc.; and the Surveillance, Epidemiology, and End Results (SEER) Program tumor registries in the development of the POC database."