WES

• COL DUO:0000020 (version: 2021-02-23)collaboration requiredThis data use modifier indicates that the requestor must agree to collaboration with the primary study investigator(s).
• US DUO:0000026 (version: 2021-02-23)user specific restrictionThis data use modifier indicates that use is limited to use by approved users.
• PS DUO:0000027 (version: 2021-02-23)project specific restrictionThis data use modifier indicates that use is limited to use within an approved project.

Data Access Policy CCIT-DK

Data Access Policy Introduction These terms and conditions govern access to the managed access datasets to which the Research Group has requested access. The Research Group agrees to be bound by these terms and conditions. Access to the Data will be reviewed on individual basis. Further, access to the Data may only be granted to requests that align with the ethical approval for these Data, and only within collaborative proposals to be outlined in a Data processing agreement, as per approved protocol. Definitions Authorised Personnel: The individuals in the Research Group to whom CCIT-DK DAC grants access to the Data. This includes the User and any other individuals for whom the Research Group subsequently requests access to the Data. Data: The managed access datasets to which the Research Group has requested access. Data Producers: CCIT-DK DAC and the collaborators responsible for the development, organisation, and oversight of these Data. External Collaborator: A collaborator of the User, working for a Research Group other than the Research Group applying for data access. Project: The project for which the Research Group has requested access to these Data. A description of the Project is set out in Appendix I. Publications: Includes, without limitation, articles published in print journals, electronic journals, reviews, books, posters and other written and verbal presentations of research. Research Participant: An individual whose data form part of these Data. Research Purposes: Shall mean research that is seeking to advance the understanding of genetics and genomics, including the treatment of disorders, and work on statistical methods that may be applied to such research. User: The principal investigator for the Project. Research group(s): The Research Group that has requested access to the Data. CCIT-DK DAC: Principal Investigators Marco Donia, MD PhD, and Inge Marie Svane, MD PhD, National Center for Cancer Immune Therapy Denmark (CCIT-DK), Copenhagen University Hospital Herlev. Data Access Policy main terms 1. The Research Group agrees to only use these Data for the purpose of the Project (described in Appendix I) and only for Research Purposes. The Research Group further agrees that it will only use these Data for Research Purposes which are within the limitations (if any) set out in Appendix I. 2. The Research Group agrees to preserve, at all times, the confidentiality of these Data. In particular, it undertakes not to use, or attempt to use these Data to compromise or otherwise infringe the confidentiality of information on Research Participants. 3. The Research Group agrees to protect the confidentiality of Research Participants in any research papers or publications that they prepare by taking all reasonable care to limit the possibility of identification. 4. The Research Group agrees not to link or combine these Data to other information or archived data available in a way that could re-identify the Research Participants, even if access to that data has been formally granted to the Research Group or is freely available without restriction. 5. The Research Group agrees only to transfer or disclose these Data, in whole or part, or any material derived from these Data, to the Authorised Personnel. Should the User Institution wish to share these Data with an External Collaborator, the External Collaborator must complete a separate application for access to these Data. 6. The Research Group agrees that the Data Producers, and all other parties involved in the creation, funding or protection of these Data: a) make no warranty or representation, express or implied as to the accuracy, quality or comprehensiveness of these Data; b) exclude to the fullest extent permitted by law all liability for actions, claims, proceedings, demands, losses (including but not limited to loss of profit), costs, awards damages and payments made by the Recipient that may arise (whether directly or indirectly) in any way whatsoever from the Recipient’s use of these Data or from the unavailability of, or break in access to, these Data for whatever reason and; c) bear no responsibility for the further analysis or interpretation of these Data. 7. The Research Group agrees to follow the Fort Lauderdale Guidelines on Sharing Data from Large-scale Biological Research Projects (Report of a meeting organized by the Wellcome Trust and held on 14–15 January 2003 at Fort Lauderdale, USA) and the Toronto Statement (http://www.nature.com/nature/journal/v461/n7261/full/461168a.html). This includes, but is not limited to, recognising the contribution of the Data Producers and including a proper acknowledgement in all reports or publications resulting from the use of these Data. 8. The Research Group agrees not to make intellectual property claims on these Data and not to use intellectual property protection in ways that would prevent or block access to, or use of, any element of these Data, or conclusion drawn directly from these Data. 9. The Research Group can elect to perform further research that would add intellectual and resource capital to these data and decide to obtain intellectual property rights on these downstream discoveries. In this case, the Research Group agrees to implement licensing policies that will not obstruct further research and to follow the U.S. National Institutes of Health Best Practices for the Licensing of Genomic Inventions (2005) (https://www.govinfo.gov/content/pkg/FR-2004-11-19/pdf/04-25671.pdf) in conformity with the Organisation for Economic Co-operation and Development Guidelines for the Licensing of the Genetic Inventions (2006) (http://www.oecd.org/science/biotech/36198812.pdf ). 10. The Research Group agrees to destroy/discard the Data held, once it is no longer used for the Project, unless obliged to retain the data for archival purposes in conformity with audit or legal requirements. 11. The Research Group will notify CCIT-DK DAC within 30 days of any changes or departures of Authorised Personnel. 12. The Research Group will notify CCIT-DK DAC prior to any significant changes to the protocol for the Project. 13. The Research Group will notify CCIT-DK DAC as soon as it becomes aware of a breach of the terms or conditions of this agreement. 14. CCIT-DK DAC may terminate this agreement by written notice to the Research Group. If this agreement terminates for any reason, the Research Group will be required to destroy any Data held, including copies and backup copies. This clause does not prevent the Research Group from retaining these data for archival purpose in conformity with audit or legal requirements. 15. The Research Group accepts that it may be necessary for the Data Producers to alter the terms of this agreement from time to time. As an example, this may include specific provisions relating to the Data required by Data Producers other than CCIT-DK DAC. In the event that changes are required, the Data Producers or their appointed agent will contact the Research Group to inform it of the changes and the Research Group may elect to accept the changes or terminate the agreement. 16. If requested, the Research Group will allow data security and management documentation to be inspected to verify that it is complying with the terms of this agreement. 17. The Research Group agrees to distribute a copy of these terms to the Authorised Personnel. The Research Group will procure that the Authorised Personnel comply with the terms of this agreement.   APPENDIX I – PROJECT DETAILS (to be completed by the Requestor / Research Group) Details of dataset requested i.e., EGA Study and Dataset Accession Number Brief abstract of the Project in which the Data will be used (500 words max) All Individuals who the Research Group to be named as registered users Name of Registered User Email Job Title Supervisor*