AT-AML samples dataset

• HMB DUO:0000006 (version: 2019-01-07)health or medical or biomedical researchThis data use permission indicates that use is allowed for health/medical/biomedical purposes; does not include the study of population origins or ancestry.
• RU DUO:0000014 (version: 2019-01-07)research use onlyThis data use limitation indicates that use is limited to research purposes (e.g., does not include its use in clinical care).
• NPUNCU DUO:0000018 (version: 2019-01-07)not for profit, non commercial use onlyThis data use modifier indicates that use of the data is limited to not-for-profit organizations and not-for-profit use, non-commercial use.

Policy for data access to files from inherited predisposition to cancer projects

UNIVERSITY OF CAMBRIDGE – DEPARTMENT OF MEDICAL GENETICS INHERITED PREDISPOSITION TO CANCER PROJECTS DATA ACCESS AGREEMENT These terms and conditions govern access to the human sequencing and derivative genotype data and datasets generated by the Tischkowitz laboratory to which the User Institution has requested access. The User Institution agrees to be bound by these terms and conditions by signing this agreement. Definitions IPCDAC means the Inherited Predisposition to Cancer Projects Data Access Committee from the Department of Medical Genetics at the University of Cambridge. Authorised Personnel are the individuals at the User Institution to whom IPCDAC grants access to the Data. This includes the User and the individuals listed in Appendix I for whom the User Institution requests access for. User means the principal researcher of the Project whose User Institution has also completed this Data Access Agreement and acknowledges its acceptance. Details of the initial Authorised Personnel are set out in Appendix I. User Institution means the organization or institution at which the User is employed, affiliated or enrolled. Data means managed access datasets from the IPCDAC to which the User Institution has requested access. Data Producers are the authors listed in the manuscript responsible for the development, organisation, and oversight of these Data. External Collaborator is a collaborator of the User, working for an institution other than the User Institution. Project means the project for which the User Institution has requested access to these Data; the description of which 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 means a person, who has provided their informed consent for the use of biological material for research and forms part of these Data. Research Purposes means research that is seeking to advance biomedical research and the understanding of genetics and genomics, including the treatment of disorders, and work on statistical methods that may be applied to such research. Terms and Conditions: 1. The User Institution agrees to only use these Data for the purpose of the Project (described in Appendix I) and only for Research Purposes. The User Institution further agrees that it will only use these Data for Research Purposes which are within the limitations (if any) set out in Appendix I. Use of these Data for a new purpose or Project will require a new application and approval. 2. The User Institution 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. Without prejudice to the generality of the foregoing, the User Institution agrees to use at least the measures set out in Appendix I to protect these Data. 3. The User Institution 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 User Institution 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 User Institution or is freely available without restriction. 5. The User Institution 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 User Institution 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 User Institution agrees to follow the Publication Policy set in Schedule I. This includes but is not limited to recognizing the contribution of the Data Producers and including a proper acknowledgement in all reports or publications resulting from the use of these Data. Additionally, the User Institution agrees to respect the moratorium period for the Data Producers to publish the first peer-reviewed report describing and analyzing these Data. 8. The User agrees to submit a report to the IPCDAC, if requested, on completion of the agreed Project. The IPCDAC agrees to treat the report and all information, data, results, and conclusions contained within such report as confidential information belonging to the User Institution. The User further agrees to provide a copy of any publications arising from the use of the Data to the IPCDAC within thirty (30) days of its publication. 9. The User Institution 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. The User Institution has the right to develop intellectual property based on comparisons with their own data. 10. The User Institution understands and acknowledges that these Data are protected by copyright and other intellectual property rights, and that duplication of these Data, except as reasonably required to carry out research with the Data, or sale of all or part of the Data on any media is not permitted. 11. The User Institution 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. 12. The User Institution accepts that Data may be reissued from time to time, with suitable versioning. If the reissue is at the request of sample donors and/or other ethical scrutiny, the User will destroy earlier versions of these Data. 13. The User Institution will notify IPCDAC as soon as it becomes aware of a breach of the terms or conditions of this agreement and it may be required to destroy the Data held. 14. IPCDAC may terminate this agreement by written notice to the User Institution. If this agreement terminates for any reason, the User Institution will be required to destroy any Data held, including copies and backup copies. This clause does not prevent the User Institution from retaining these data for archival purpose in conformity with audit or legal requirements. 15. The User Institution accepts that it may be necessary for the Data Producers or the IPCDAC to alter the terms of this agreement, in order to address new concerns. In the event that changes are required, the Data Producers or their appointed agent will contact the User Institution to inform it of the changes and the User Institution may elect to accept the changes or terminate the agreement. 16. The User Institution agrees that these Data are protected by and subject to international laws, including but not limited to the UK Data Protection Act 1998, and it is responsible for ensuring compliance with any such applicable law. If requested, the User Institution will allow data security and management documentation to be inspected to verify that it is complying with the terms of this agreement. 17. The User Institution agrees to distribute a copy of these terms to the Authorised Personnel. The User Institution will procure that the Authorised Personnel comply with the terms of this agreement. 18. In the event of any dispute with respect to this agreement, the parties hereby agree to first attempt to resolve the matter informally through designated senior representatives of each party. In the event that the dispute cannot be resolved informally the parties hereby agree that the matter may be submitted to a court having competent jurisdiction where the defendant party has its principal office. ~~~~~~~~~~~~~~~~~~~~~~~ SCHEDULE 1 IPCDAC Publications Policy The IPCDAC intends to publish the results of their analyses and do not consider its deposition into public databases to be the equivalent of such publications. The IPCDAC anticipates that data generated from the project will be used by others, as required for developing new methods, validation of results and the identification of additional genetic variations and alterations in the data beyond IPCDAC publications. However, some areas of work are subject to a publication moratorium. The publication moratorium covers any publications (including oral communications) that describe the use of the dataset. For research papers, submission for publication should not occur until 9 months after these data were first made available on the relevant hosting database, unless IPCDAC has provided written consent to earlier submission. Authors who use data from the project must acknowledge the IPCDAC using the following wording "This study makes use of data generated by the Department of Medical Genetics at the University of Cambridge" and cite the relevant primary publication, including the name of the data hosting database (e.g., The European Genome-phenome Archive at the European Bioinformatics Institute) and its accession numbers. Users should note that the IPCDAC bears no responsibility for the further analysis or interpretation of these data, over and above that published by the IPCDAC. ~~~~~~~~~~~~~~~~~~~~~~~ Terms and Conditions agreed for and on behalf of the User: Name of Applicant(s): _____________________________________ _____________________________________ _____________________________________ _____________________________________ Signature of Applicant(s): _____________________________________ _____________________________________ _____________________________________ _____________________________________ Email address of Applicant(s): _____________________________________ _____________________________________ _____________________________________ _____________________________________ Date: _____________________________________ Agreed for and on behalf of the User Institution: Signature of Institutional or Administrative Authority: ______________________________________ Print name: ______________________________________ User Institution: ______________________________________ Date: ______________________________________ WHEN SUBMITTING THIS DOCUMENT, PLEASE INCLUDE ALL PAGES OF THE AGREEMENT WITH THIS SIGNATURE PAGE, INCLUSIVE OF THE PROJECT DETAILS APPENDIX I – PROJECT DETAILS (to be completed by the requestor) A) Details of dataset requested i.e., EGA Study and Dataset Accession Number B) All Individuals that should have an account created at the EGA Name of Registered User Email Job Title C) Brief description of the Project in which the Data will be used (500 words max)