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THE HOSPITAL FOR SICK CHILDREN DATA ACCESS AGREEMENT

THE HOSPITAL FOR SICK CHILDREN ("SickKids") DATA ACCESS AGREEMENT(Access to Genomic Data)This Data Access Agreement (“Agreement”) governs the terms on which access will be granted to the genotype data generated by the Principal lnvestigators, Drs. Tabori and Shlien, and SickKids.In signing this Agreement, the User (as defined below) is 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 Institution (as defined below). User Institution and User are referred to within the Agreement as "You" and "Your" shall be construed accordingly.Definitions:Tabori/Shlien/SickKids means Drs. Tabori and Shlien and The Hospital for Sick Children. Data means all and any published human expression or genomic data described in Schedule 2 obtained from Tabori/Shlien/SickKids.Data Subject(s) means a person, who has been informed of the purpose for which the Data is held and has given his/her informed consent thereto, as approved by the appropriate Research Ethics Board ("REB") or consistent with an REB waiver of consent.User means a qualified researcher whose User Institution has previously completed this Data AccessAgreement 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.User Institution means the academic 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, according to the consent obtained from Data Subject(s).2.You agree that You are a laboratory head, principal investigator or departmental chair and take responsibility for the distribution restrictions defined in Section 4 of this Agreement, and use of and protection of the Data by your laboratory.3. You agree not to use the Data from Tabori/Shlien/SickKids 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 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 Drs. Tabori and Shlien or a designate of Drs. Tabori and Shlien , as applicable.6. You agree not to transfer or disclose the Data, in whole or part, or any identifiable material derived from the Data, to others, including other investigators and laboratories in the User Institution, except as necessary for data/safety monitoring or programme management. Should You wish to share the Data with a collaborator within or outside the User Institution, the third party must make a separate application to access the Data.7. You agree to use the Data for the approved purpose and project described in Your application described in Schedule 2; use of the Data for a new purpose or project will require a new application and approval.8. You agree that you have the computation infrastructure and expertise to analyse the Data.9. You agree that the Data are made available for one (1) year. You agree to destroy the Data after on (1) year. You must re-apply to access the Data after this period.10. You accept that Data will be reissued from time to time, with suitable versioning. If the reissue is at the request of sample donors and/or other ethical scrutiny, You will destroy earlier versions of the Data.11.You agree to abide by the terms outlined in the SickKids 'Publications Policy' as set out in Schedule 1. 12. You accept that the genomic data provided to You is provided "as is" without associated phenotype data or data verifying and/or validating the presence of putative genetic alterations.13. You agree to acknowledge in any work based in whole or part on the Data, the published paper from which the Data derives, the version of the Data, and the role of Tabori/Shlien/SickKids and the relevant primary collectors and their funders. Suitable wording is provided in the Publications Policy given in Schedule 1.14.You accept that Tabori/Shlien/SickKids, the original Data creators, 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; andb)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.15.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.16.You recognize that nothing in this Agreement shall operate to transfer to the User or 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.17. You accept that this Agreement will terminate immediately upon any breach of this Agreement byYou and You will be required to destroy any Data held.18. You accept that it may be necessary for Tabori/Shlien/SickKids or its appointed agent to alter the terms of this Agreement from time to time in order to address new concerns. In this event, Tabori/Shlien/SickKids or its appointed agent 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.19.You agree that you will submit a report to Tabori/Shlien/SickKids, if requested, on completion of the agreed purpose. Tabori/Shlien/SickKids agree to treat the report and all information, data, results, and conclusions contained within such report as confidential information belonging to the User Institution. You further agree to provide a copy of any Publications arising from the use of the Data to Tabori/Shlien/SickKids within thirty (30) days of its publication.20.You accept that the Data is protected by and subject to international laws, including but not limited to the UK Data Protection Act 1998, the Ontario Personal Health Information Protection Act, 2004 and the Canadian Personal Information and Electronic Documents Act, 2000, and that You are responsible for ensuring compliance with any such applicable law. Drs. Tabori and Shlien, and SickKids reserve 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 Canada and the UK.21.This Agreement shall be construed, interpreted and governed by the laws of the Province of Ontario and federal laws of Canada applicable thereto and shall be subject to the non-exclusive jurisdiction of the Ontario courts.Read and agreed to by User:Name ofUser: Signature ofUser: Date:For and on behalf of User Institution: Signature ofInstitutional SigningAuthority: Print name:_____________________________________User Institution:_____________________________________Date:_____________________________________WHEN SUBMITTING THIS DOCUMENT, PLEASE INCLUDE ALL PAGES OF THE AGREEMENT WITH THIS SIGNATURE PAGE TOGETHER WITH THE SICKKIDS APPLICATION FORM ATTACHED HERETO AS SCHEDULE 2. SCHEDULE 1Publications PolicyThe Hospital for Sick Children is recognized as one of the world's foremost paediatric health-care institutions and is Canada's leading centre dedicated to advancing children's health through the integration of patient care, research and educationTabori/Shlien/SickKids anticipates that Data generated from the project will be used by others, such as required for developing new analytical methods, validation of results, and the identification of additional genetic variations and alterations in the data.Authors who use Data from the project must acknowledge Tabori/Shlien/SickKids using the following wording "This study makes use of data generated by the Principal Investigators Drs. Tabori and Shlien and the Hospital for Sick Children" and cite the relevant primary publication by the aforementioned.Users should note that Tabori/Shlien/SickKids bear no responsibility for the further analysis or interpretation of these Data, over and above that published by the Tabori/Shlien/SickKids.