Expanding the neurodevelopmental phenotypes of individuals with de novo KMT2A variants

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DATA ACCESS AGREEMENT This agreement governs the terms on which access will be granted to the whole genome sequence data generated and published in Chan et al. (2019). Expanding the neurodevelopmental phenotypes of individuals with de novo KMT2A variants XXX (to be completed upon publication). In 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 under this Database Access Agreement. Data Subject means a person, who has been informed of the purpose for which the Data is held and has given his/her informed consent thereto. User means a researcher whose User Institution has previously completed this Data Access Agreement and has received acknowledgement of its acceptance. Publications means, without limitation, articles published in print journals, electronic journals, reviews, books, posters and other written and verbal presentations of research performed using the Data. User Institution means the organization 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 in accordance with the approved proposal that you submitted unless otherwise required by law. 2. You agree not to use the Data for the creation of products for sale or for any commercial purpose, without the prior negotiation of a commercial license with the Consortium. 3. 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. You agree that you will not use the Data to re-identify any individual. 4. You agree not to attempt to link the Data provided under this agreement to other information or archive data available for the data sets provided, even if access to that data has been formally granted to you, or it is freely available without restriction, without specific permission being sought from the relevant access committees. 5. You agree not to transfer or disclose the Data, in whole or part, or any identifiable material derived from the Data, to others, except as necessary for data/safety monitoring or program management. Should you wish to share the Data with a collaborator from another institution, that third party must make a separate application for access to the Data. 6. 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In this event, The Hospital for Sick Children or its appointed agent will notify 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. 15. You agree that you will submit a report to The Hospital for Sick Children, if requested, on completion of the agreed purpose. The Hospital for Sick Children agrees to treat the report and all information, data, results, and conclusions contained within such a report as confidential information belonging to the User Institution. 16. You accept that the Data are protected by and subject to laws in various international jurisdictions, including without limitation laws in the EAA and Canada, and that you are responsible for ensuring compliance with any such applicable law. The Data Access Committee reserves the right to request and inspect data security and management documentation to ensure the adequacy of data protection measures in countries that have no national laws comparable to that which pertain in the EAA and Canada. 17. Any legal action, claim or other legal proceeding commenced by one party hereto against another party, arising out of this Agreement, shall be commenced in the courts of the jurisdiction in which the responding party is situated; and for the purposes of such proceeding, this Agreement shall be governed by, and shall be interpreted, construed and enforced, in accordance with the laws of that same jurisdiction.