When requesting access to the SEER Research Plus Data, you must agree to the NCCR Research Data Use Agreement as well. The NCCR data will be made available through SEER*Stat along with the SEER Research Plus Data. You may review the language of the agreement below (this cannot be used to request access to the data).
This National Childhood Cancer Registry (NCCR) Research Data Use Agreement (DUA) (the "Agreement") outlines the terms and conditions for access to data in the National Cancer Institute (NCI) NCCR Research, Research Plus, Specialized, and Customized Databases (collectively, the "Databases"). The parties to this Agreement include the "Authorized User"", indicated in this data use request, and the NIH. The effective date of this Agreement is the date of Authorized User's acceptance of the agreement ("Effective Date"). This agreement must be renewed annually, one year from Authorized User's Effective Date.
- The NCCR Program developed the Databases to support research and makes them available through the SEER software offerings.
- This Agreement governs Authorized User's use and disclosure of data obtained from the Databases and data derived from that data (collectively referred to in this Agreement as "Data").
- For Research Projects that involve multiple individuals, a DUA must be executed separately by each individual participating in the research project.
- Use and Disclosure Restricted: Authorized User will use or disclose the Data only for the purposes for which they were supplied. Requests for data with increased risk to re-identify individuals will require additional application materials and Authorized User will only use data for the purposes approved by the NCI.
- Compliance: Authorized User will use Data in full compliance with all applicable laws and NIH policies and guidance documents. To the extent NIH policies or guidance documents are inconsistent with the terms of this Agreement, the terms of this Agreement will supersede NIH policies or guidance.
- No Data Linkage across SEER Databases: Authorized User will not attempt to link data from individual NCCR Databases with Research Plus or other Specialized or Customized Databases. This includes, but is not limited to, combining two or more NCCR or SEER Databases to which Authorized User has access. Analyses using Authorized data for approved projects with a government-provided encrypted identifier are permitted.
- No Re-Identification of Individuals: Authorized User will not attempt to learn the identity of any individual whose Data is contained in the Databases or share information that would lead to the identification of individuals described in the Databases. If Authorized User or any other person inadvertently discovers the identity of an individual whose Data is in the Databases, Authorized User will: (a) make no use of this knowledge, including informing others, other than NCI Surveillance Research Program (SRP), of the discovered identity, (b) not contact any individual, and (c) notify NCI SRP of the incident under Section 12, below. Authorized User agrees not to generate information from Data that could allow the identities of individuals to be readily ascertained.
- No Release to Others: Authorized User will not release, in full or in part, nor permit others to release, the Data to any other person. All members of a research team who wish to have access to the Data must sign a separate NCCR Research Data Use Agreement. Authorized User will not disclose Data in any Federal, State, or local civil, criminal, administrative, legislative, or other proceeding without advance written approval of the NCI SRP. Authorized User will not make copies or remove data from their approved Institution except as authorized by this Agreement.
- Required Safeguards: Authorized User will use appropriate safeguards to prevent unauthorized use or disclosure of the Data. Authorized User will not share their login name or password with any other person. Authorized User will not allow any other person to use Authorized User's computer account after Authorized User has logged on with Authorized User's login name and password (refer to the Best Practices Assurance for Securing NCI-supported Registry Data).
- Change of Institution by the Authorized User: If the Authorized User plans to leave their institution, the Authorized User must contact NCI in writing prior to the transition for instructions on how to handle the NCCR data. Authorized User may not duplicate any NCCR files prior to the transition nor can Authorized User take NCCR data with them without written permission from NCI. All Customized files under the purview of the Authorized User must be destroyed prior to their departure or someone must agree to assume the responsibilities of the PI as described in this document. That person must also receive approval from the NCI to hold those data through a data access request and sign a Data Use Agreement before assuming the responsibility of NCCR data.
- Notice of Unauthorized Data Use, Unauthorized Data Sharing, Identification of Individuals in Data, or Breaches of Security: Authorized User agrees to notify the NCI SRP at email@example.com of any unauthorized Data use or disclosure, identification of individuals whose Data is in the Databases, or breaches of security that may compromise the confidentiality of Data, within 24 hours of when the incident is discovered. Within 3 business days of notification, Authorized User agrees to submit to the NCI SRP a detailed written report including the date and nature of the incident, actions taken or that will be taken to remediate the issue(s) and to prevent further problems (the "Remediation Plan"), and a timeline for actions in the Remediation Plan. Authorized User agrees to cooperate with an investigation by NIH (or another entity designated by NIH), to work with NIH to assure that the Remediation Plan is sufficient, and to provide documentation verifying that the Remediation Plan has been implemented. Repeated violations or unresponsiveness to NIH requests may result in further compliance measures affecting Authorized User.
- Software: For all software provided to Authorized User by the NCI SRP ("NCI Software"), Authorized User will not copy, distribute, reverse engineer, sell, lease, or incorporate NCI Software into any other software system.
- Software training: Authorized User will complete necessary trainings for SEER software offerings (for example, SEER*Stat and NCCR Data Platform) if not already trained.
- Data Access through VPN: Authorized User may use an institutionally provided VPN to access the Customized data. In this case, the remote PC may support the VPN, but the NCCR data must remain on the institution's server. Additionally, access to the VPN shall be restricted to persons residing within the United States.
- Publication: It is NIH's intent to promote the dissemination of research findings as widely as possible through scientific publication or other appropriate public dissemination mechanisms. However, Authorized User will not present or publish Data or the results of research conducted with Data in which an individual can be identified. Authorized User will not publish information on an individual, including information generated by individual-level data, even if such information cannot directly identify an individual. Authorized User will follow all NIH policies, including any policy on small cell sizes. After release, Authorized Users will provide the NCI with the appropriate citation of any publications, abstracts, presentations, manuscripts, book chapters, or other materials generated through analysis conducted with the Databases by emailing firstname.lastname@example.org. Upon NCI request, Authorized Users will send a copy of any materials generated through analysis conducted with the Databases. Publication in open access journals is preferred as NCI recognizes the full value of CCDI-supported projects can only be realized if Publications are disseminated as promptly and broadly as possible and investigators adhere to NIH data sharing policies.
- Required Acknowledgments: Authorized User agrees to acknowledge the NCCR Databases and specific version of the dataset(s) analyzed, in all oral and written presentations, disclosures, and publications resulting from any analyses of Databases. The appropriate citation is associated with the data file used, which may be found in Suggested Citations for the database on the SEER*Stat Data tab or the Recommended Citation section of other SEER software offerings.
- NCI Use of Information about Authorized Users: Authorized User agrees that information about Authorized User and the approved research will be posted publicly on the NCCR website, including Authorized User's name, the project name, and information provided in the Data Access Request (DAR) and other application materials. Authorized User agrees that citations of publications resulting from the use of the Databases may be posted on NCI websites. Authorized User agrees that NIH may use information provided in the DAR and other application materials for purposes of enforcing this Agreement and administering the NCI NCCR Program.
- Term and Termination of Agreement: This Agreement will continue until terminated by Authorized User or expiration date. NIH will require Authorized User to submit an application annually to continue access to the Databases. This Agreement will automatically terminate if Authorized User fails to submit a renewal application. NIH also may terminate this Agreement and immediately revoke or suspend access to Data if NIH determines the Authorized User has breached this Agreement.
- Disposition of Data upon Termination and Project Close-Out Form: Upon termination of this Agreement, Authorized User agrees to destroy all Customized Data, including copies and derivatives of Data, wherever located, including local servers and hardware, media, paper, and cloud computing storage, virtual and physical machines, databases, and random-access archives.
- No Warranty: DATA IS PROVIDED ON AN AS-IS, WHERE-IS BASIS, AND ARE NOT WARRANTED TO BE ERROR-FREE OR COMPLETE. NIH MAKES NO EXPRESS OR IMPLIED WARRANTIES AND EXPRESSLY DISCLAIMS THE IMPLIED WARRANTIES OF PERFORMANCE, MERCHANTABILITY, AND FITNESS FOR A PARTICULAR PURPOSE.
- Liability: Each party will be responsible for its own actions. The NIH, as an agency of the United States, may be liable only to the extent provided under the Federal Tort Claims Act, 28 USC 2671 et seq.