Targeted sequencing of follicular lymphoma tumour samples from the UK's Haematological Malignancy Research Network

Standard HMRN data access policy

DATA ACCESS AGREEMENT between (1) THE UNIVERSITY OF YORK, a body incorporated in England and Wales by Royal Charter with registration number RC000679 whose principal offices are at Heslington, York, YO10 5DD, United Kingdom (“York”); and (2) [Include registered details (name, address) of User Institution] (“User Institution”). These terms and conditions govern access to the managed access datasets (details of which are set out in Appendix I) to which the User Institution has requested access. Intending to be legally bound, UoY and the User Institution agree as follows: 1. Definitions Authorised Personnel: shall mean a researcher employed by the User Institution to whom York grants access to the Data that is bound by confidentiality and non-use obligations in respect of the Data. For the avoidance of doubt, Authorised Personnel may also include students or visiting academics provided that any such individual is bound by confidentiality and non-use obligations no less onerous than those binding the User Institution’s employees. Authorised Personnel includes the User, the individuals listed in Appendix II and any other individuals for whom the User Institution subsequently requests access to the Data. Details of the initial Authorised Personnel are set out in Appendix II. Data: The managed access datasets to which the User Institution has requested access. Effective Date: The date that the last party signs this Agreement. EGA: The European Genome Phenome Archive https://ega-archive.org/about/introduction External Collaborator: A collaborator of the User, working for an institution other than the User Institution. Intellectual Property: means (i) patents, designs, trade marks and trade names (whether registered or unregistered), copyright and related rights, database rights, know-how and confidential information; (ii) all other intellectual property rights and similar or equivalent rights anywhere in the world which currently exist or are recognised in the future; and (iii) applications, extensions and renewals in relation to any such rights. Project: The project for which the User Institution has requested access to these Data. A description of the Project is set out in Appendix II. 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. User Institution: The Institution that has requested access to the Data, as written above: 2. Purpose 2.1 The User Institution agrees to only use these Data for the purpose of the Project (described in Appendix II) 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. 2.2 The User Institution will notify York prior to any significant changes to the protocol for the Project. 3. Confidentiality 3.1 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. 3.2 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. Data Protection, Access and Governance 4.1 The User Institution agrees that it, and its Authorised Personnel, shall not analyse or make any use of the Data in such a way that has the potential to: 1. lead to the identification of any Research Participant; or 2. compromise the anonymity of any Research Participant in anyway. 4.2 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. 4.3 Access to the Data shall be granted through named EGA Account Holder(s) (as recorded in Appendix II) to allow the download of the Data from the EGA. EGA Accounts are personal accounts and login details must not be shared. Sharing Login details shall be deemed to be a breach of data security. 4.4 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. 4.5 The User Institution agrees that before it gives any Authorised Personnel access to Data, it shall first show the Authorised Personnel a copy of this Agreement and shall procure that they comply with the obligations contained in this Agreement. The User Institution shall procure that the User shall acknowledge the requirements of this Agreement in the form set out at the end of this Agreement. 4.6 The User Institution will notify York within 30 days of any changes or departures of Authorised Personnel. 4.7 If requested by York, the User Institution will allow its data security and management procedures to be audited to verify that it is complying with the terms of this Agreement. 4.8 The User Institution agrees to destroy/discard the Data held, once it is no longer used for the Project. 5. Warranty disclaimer 5.1 The User Institution acknowledges that York and all other entities involved in the creation, funding or protection of the Data: 1. make no warranty or representation, express or implied as to the accuracy, quality or comprehensiveness of the Data; and 2. 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 User Institution that may arise (whether directly or indirectly) in any way whatsoever from the User Institution’s use of the Data, or from the unavailability of, or break in access to the Data for whatever reason. 6. Intellectual Property 6.1 The User Institution acknowledges that nothing in this Agreement shall operate to transfer to the User Institution or its Authorised Personnel any Intellectual Property rights in or relating to the Data. 6.2 The User Institution agrees 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. 6.3 The User Institution agrees to implement licensing policies in respect of Intellectual Property protection it obtains in respect of discoveries arising from its use of the Data that will not obstruct further research and are 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 ). 7. Publication 7.1 The User Institution agrees to acknowledge in any work based in whole or part on the Data, the published paper from which the Data derives, and the role of its funders in its distribution. The User Institution agrees to use the acknowledgement wording (if any) provided for the relevant Data in its publication. The User Institution will also declare in any such work that those who carried out the original analysis and collection of the Data bear no responsibility for the further analysis or interpretation of it by the User Institution. 8. Term and Termination of Agreement 8.1 This Agreement will commence as of the Effective Date and shall remain in effect, unless terminated under the conditions below. 8.2 This Agreement will terminate immediately upon any breach of the provisions of this Agreement by the User Institution or by its Authorised Personnel. 8.3 The User Institution accepts that the changing ethical framework of human genetic research may lead to: (i) alteration to the provisions of this Agreement, in which case York shall notify the User Institution in writing of such alterations and the User Institution may choose to accept such alterations or to terminate this Agreement; or (ii) in extreme circumstances, the withdrawal of this Agreement. 8.4 Either party shall have the right to terminate this Agreement with immediate effect upon giving written notice of termination to the other party. 8.5 In the event that this Agreement is terminated in accordance with this Clause 8 the User Institution shall return or destroy all Data at the direction of York. 8.6 The following provisions will survive any termination of this Agreement: clause 3 (Confidentiality), clause 5 (Warranty disclaimer), clause 6 (Intellectual Property), clause 7 (Publication), clause 8.5, clause 8.6, and clause 9 (Governing Law and Jurisdiction). 9. Governing Law and Jurisdiction 9.1 This Agreement (and any dispute, controversy, proceedings or claim of whatever nature arising out of this agreement or its formation) shall be construed, interpreted and governed by the laws of England and Wales and shall be subject to the exclusive jurisdiction of the English courts. Agreed for User Institution Signature: Name: Title: Date: Principal Investigator I confirm that I have read and understood this Agreement. Signature: Name: Title: Date: Agreed for The University of York Signature: Name: Title: Date: APPENDIX I – DATASET DETAILS APPENDIX II ––PROJECT DETAILS APPENDIX I – DATASET DETAILS (to be completed by York before passing to applicant) Dataset reference (EGA Study ID and Dataset Details) EGA Study ID: EGAS00001005238 Study title: Targeted sequencing of follicular lymphoma tumour samples from the UK's Haematological Malignancy Research Network EGA dataset ID: EGAD00001007657 Dataset title: Targeted sequencing of follicular lymphoma tumour samples from the UK's Haematological Malignancy Research Network Name of project that created the dataset Haematological Malignancy Research Network Specific limitations on areas of research None Minimum protection measures required Data can be held in unencrypted files on an institutional compute system, behind a secure firewall, with read/write permissions restricted to Authorized Personnel. Data may not be held on laptops, or on any other portable computing device, or on portable storage. APPENDIX II – PROJECT DETAILS (to be completed by the Requestor) 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 User Institution elects to be named as Authorised Personnel Name of Authorised Personnel Email Job Title All Individuals that should have an account created at the EGA Name of EGA Account Holder Email Job Title