POLG data MS-affected co-twins

MS-Twin Data Access Agreement

This agreement governs the terms on which access will be granted to data generated by the MS-Twin study. By signing this agreement, You are agreeing to be bound by the terms and conditions of access set out in this agreement. For the sake of clarity, the terms of access set out in this agreement apply both to the User and the User’s Institution (as defined below). User Institution and User are referred to within the agreement as “You” and “Your” shall be construed accordingly. Definitions: - Data means all and any human genetic data obtained from the MS-Twin study. - Data Subject means an individual having contributed personal data/biomaterial to the MS-Twin study. - Publications means, without limitation, articles published in print journals, electronic journals, reviews, books, posters and other written and verbal presentations of research. - User means a researcher whose User Institution has previously completed this Data Access Agreement and has received acknowledgement of its acceptance. - User Institution means the organisation at which the User is employed, affiliated or enrolled. Terms and Conditions: In signing this Agreement: 1. You agree to use the Data only for the advancement of medical research, according to the consent obtained from the Data Subjects. 2. You agree to use the data for the approved purpose and project described in your MS-Twin Data Access Application form; use of the data for a new purpose or project will require a new application and approval. 3. You agree not to use the data from the MS-Twin study or any part thereof for the creation of products for sale or for any commercial purpose. 4. You agree to preserve, at all times, the confidentiality of information and Data pertaining to Data Subjects. In particular, You undertake not to use, or attempt to use the Data to compromise or otherwise infringe the confidentiality of information on Data Subjects and their right to privacy. 5. You agree to protect the confidentiality of Data Subjects in any research papers or publications You prepare by taking all reasonable care to limit the possibility of identification. 6. You agree not to attempt to link or combine the Data provided under this agreement to other information or archived data available in a way that could re-identify the Data Subject, even if access to that data has been formally granted to you, or is freely available without restriction. 7. You agree not to transfer or disclose the Data, in whole or part, or any material derived from the Data, to anyone not listed in the sections A “Name of applicant (principal investigator), including affiliations and contact details” and B “Name of co-applicant(s), including affiliations and contact details” of the MS-Twin Data Access Application form, except as necessary for data safety monitoring or program management. Should You wish to share the Data with an external collaborator, then the external collaborator must complete a separate application for access to the Data. 8. You agree to destroy/discard any Data held once it is no longer used for the project described in your application. 9. You accept that the MS-Twin study, the original data producers, depositors or copyright holders, or the funders of the Data or any part of the Data supplied: a) bear no legal responsibility for the accuracy or comprehensiveness of the Data; b) accept no liability for indirect, consequential, or incidental, damages or losses arising from use of the Data, or from the unavailability of, or break in access to, the Data for whatever reason; c) bear no responsibility for the further analysis or interpretation of these Data, over and above that published by the MS-Twin study. 10. You agree to acknowledge in any work based in whole or part on the Data, the published paper from which the Data derives and the version of the data. 11. You accept that Data will be reissued from time to time, with suitable versioning. If the reissue is at the request of a Data Subject and/or other ethical scrutiny, You will destroy earlier versions of the Data. 12. You understand and acknowledge that the Data is protected by copyright and other intellectual property rights, and that duplication, except as reasonably required to carry out Your research with the Data, or sale of all or part of the Data on any media is not permitted. 13. You recognise that nothing in this agreement shall operate to transfer to the User Institution any intellectual property rights relating to the Data. The User Institution has the right to develop intellectual property based on comparisons with their own data. 14. You accept that this agreement will terminate immediately upon any breach of this agreement by You, and You will be required to destroy any Data held. 15. You accept that it may be necessary for the MS-TWIN study to alter the terms of this agreement from time to time in order to address new concerns. In this event, the MS-TWIN study will contact You to inform You of any changes and You agree that Your continued use of the Data shall be dependent on the parties entering into a new version of the Agreement. 16. You agree that you will submit a report to the MS-TWIN Data Access Committee, if requested, on completion of the agreed purpose. The MS-Twin Data Access Committee agrees to treat the report and all information, data, results, and conclusions contained within such report as confidential information belonging to the User Institution. 17. You agree to distribute a copy of this agreement and explain its content to any person mentioned in section B “Name of co-applicant(s), including affiliations and contact details” of the MS-TWIN Data Access Application form. For and on behalf of User: Applicant (principal investigator) Name: Date: Signature: For and on behalf of User Institution: Authorized institutional representative: Name: User Institution: Date: Signature: WHEN SUBMITTING THIS DOCUMENT, PLEASE INCLUDE ALL PAGES OF THE AGREEMENT WITH THIS SIGNATURE PAGE!