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Hospital for Sick Children Data Access Agreement

SickKids Data Access Agreement THE HOSPITAL FOR SICK CHILDREN ("SickKids") DATA ACCESS AGREEMENT (Access to Genomic/Proteomic Data) This agreement governs the terms on which access will be granted to the genotype data generated by the principal investigator, Dr. Cynthia Hawkins, 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's Institution (as defined below). User Institution and User referred to within the agreement as "You" and "Your" shall be construed accordingly. Definitions: Hawkins/SickKids means Dr. Hawkins and The Hospital for Sick Children. Data means all and any published human expression or genomic/proteomic data obtained from Hawkins/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 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. User Institution means the academic 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 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 Hawkins/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 Dr. Hawkins or a designate of Dr. Hawkins, 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 your 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 same 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; 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. By signing this Agreement, You agree not to use the Data generated for each tumour type for any Publication for a minimum of nine (9) months after public release of the Data by Dr. Hawkins or until Publication of the Data by Dr. Hawkins, whichever occurs first. 12. You accept that the genomic/proteomic data provided in this initial nine (9) month period following disposition 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 Hawkins/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 Hawkins/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; and 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. 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 recognise 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 and/or 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 by You and You will be required to destroy any Data held. 18. You accept that it may be necessary for Hawkins/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, Hawkins/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 Hawkins/SickKids, if requested, on completion of the agreed purpose. Hawkins/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 Hawkins/SickKids withing 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. Dr. Hawkins, and SickKids 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. 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. SCHEDULE 1. Publications Policy The 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 education. The Hawkins lab is focused on the cellular and molecular mechanisms that underlie tumour development and maintenance in central nervous system diffuse midline glioma/diffuse intrinsic pontine gliomas, the main cause of brain tumour death in children. Current projects involve use of high resolution genomic/proteomic tools such as whole genome sequencing, whole exome sequencing, SNP microarrays, epigenetic and gene expression data, high-resolution mass spectrometry data, and data integration, as well as use of the data generated to answer important methodological and biological questions. Hawkins/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 to assist in understanding patterns of polymorphism and in guiding selection of markers to map genes involved in specific diseases. Authors who use Data from the project must acknowledge Hawkins/SickKids using the following wording “This study makes use of data generated by the Principal Investigator Dr. Cynthia Hawkins and the Hospital for Sick Children" and cite the relevant primary publication by the aforementioned. Users should note that Hawkins/SickKids bears no responsibility for the further analysis or interpretation of these Data, over and above that published by the Hawkins/SickKids. For and on behalf of User: Name ofApplicant(s): Signature ofApplicant(s): Date: For and on behalf of 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 TOGETHER WITH THE SICKKIDS APPLICATION FORM ATTACHED HERETO AS APPENDIX 1. APPENDIX 1 Arthur and Sonia Labatt Brain Tumour Research Centre Application for Access to Hawkins/Sickkids Data Name of applicant and co-applicant(s), including affiliations and contact details. Please ensure that a full postal and email address is included for each applicant. PhD student applicants must include their supervisors as a co-applicant and provide their full contact details. Title of Project In less than 30 words. Data Requested Please indicate which type of data you require. Research Question Please provide a clear description of the project and its specific aims in no more than 750 words. This should include specific details of what you plan to do with the data and include key references. Feasibilty Please describe fully your experience and expertise, and that of your collaborators, and how this will be applied to the proposed study. A publication list MUST be provided for the applicant, co-applicants and PhD supervisors where PhD students have applied. The committee needs assurance of competence in handling datasets of this size and nature. I have read and agree to abide by the terms and conditions outlined in the Data Access Agreement and the Publication Policy WTCCC DAA ver18, Jun 2010.