Plasma DNA profile in DNASE1L3 deficiency

Policy for Plasma DNA data sharing

The CUHK Circulating Nucleic Acids Research Group Data Access Agreement This agreement governs the terms and conditions on which access will be granted to users of the sequencing and genotyping data generated by The Chinese University of Hong Kong (CUHK) Circulating Nucleic Acids Research Group (CNARG). The terms and conditions of access set out in this agreement apply both to the User and the User’s Institution (both as defined below). User is referred to within the agreement as “You” and the term “Your” will be construed accordingly. By signing this agreement, You agree to be bound by the terms and conditions of access set out in this agreement. Definitions: Group means The Chinese University of Hong Kong (CUHK) Circulating Nucleic Acids Research Group (CNARG). Data means all and any human genetic data obtained by User or User’s Institution from the Group via the European Genome-phenome Archive. 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. In the event that the Data Subject is legally incapable of giving an informed consent, such consent has been given by his/her legal guardian. User means a researcher whose User’s Institution has previously completed this Data Access Agreement and has received acknowledgement of its acceptance by the Group. Data Access Committee means a committee assigned by the Group for reviewing and approving the data access application of the User. The committee consists of three or more investigators from the Group. Publications means, without limitation, articles published in print journals, electronic journals, reviews, books, posters and other written, electronic, graphical, photographic, recorded (including oral recordings), and verbal presentations of research. User’s Institution means the organisation at which the User is employed, affiliated or enrolled. Terms and Conditions: By signing this agreement: 1. You agree to use the Data only for the advancement of medical and scientific research, according to the consent given by Data Subjects. 2. You agree not to use the Data for the creation of products for sale or for any commercial purpose. 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. 4. You agree not to transfer or disclose the Data, in whole or in part, or any information/material derived from the Data, to others, except as reasonably necessary for data/safety monitoring or programme management. Should You wish to share the Data with a collaborator within the same User’s Institution, the collaborator must make a separate application for access to the Data. 5. You agree to use the Data for the approved purpose and project described in your application only; use of the Data for a new purpose or project will require a new application and approval. 6. You agree to acknowledge in any work based in whole or in part on the Data, the publications from which the Data derives, the version of the Data, and the role of the Group. The wordings of the acknowledgement are “This study makes use of data generated by The Chinese University of Hong Kong (CUHK) Circulating Nucleic Acids Research Group, as reported by Chan et al in Clinical Chemistry (doi:10.1373/clinchem.2012.196014). 7. You accept that the Group, the original data creators, depositors or copyright holders, or the funders of the Group: a) make no warranties or representations with respect to the Data, including but not limited to its fitness for purpose, accuracy or comprehensiveness, the continued access to the Data without interruption; and b) accept no liability for any direct, indirect, consequential, special or incidental, damages or losses arising from or in connection with the use of the Data or this agreement. 8. You understand and acknowledge that the Data is protected by copyright and other intellectual property rights, and that reproduction, except as reasonably required to carry out Your research with the Data in accordance with the approved purpose referred to in paragraph 5 above, or sale of all or part of the Data in any form is not permitted. 9. You agree that nothing in this agreement shall operate to transfer to You or to the User’s Institution any intellectual property rights relating to the Data. 10. You accept that this agreement will be terminated immediately by the Group without notice upon breach of any terms of this agreement by You and You agree to destroy any Data held when required. 11. You accept that it may be necessary for the Group or its appointed agent to alter the terms of this agreement from time to time in order to address new concerns. In this event, the Group or its appointed agent will to inform You of any changes. You agree that Your continued use of the Data shall be deemed to represent your consent to any revised terms of the Agreement. 12. You agree that you will submit a report to the Data Access Committee, if requested, on completion of the agreed purpose. The 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’s Institution. 13. You accept that the Data is protected by the privacy law in the relevant jurisdiction and that You are responsible for ensuring Your use of the Data is in compliance with any such applicable law. Notwithstanding the above, nothing in this agreement shall limit the rights of the Data Subjects under the Personal Data (Privacy) Ordinance (Cap 486) in Hong Kong. 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 Personal Data (Privacy) Ordinance in Hong Kong. 14. This agreement shall be construed, interpreted and governed by the laws of Hong Kong Special Administrative Region.   For and on behalf of User: Name of Applicant(s): _____________________________________ _____________________________________ _____________________________________ _____________________________________ Signature of Applicant(s): _____________________________________ _____________________________________ _____________________________________ _____________________________________ Date: _____________________________________ For and on behalf of User’s Institution: Signature of Institutional or Administrative Authority: ______________________________________ Print name: ______________________________________ User’s Institution: ______________________________________ Date: ¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬______________________________________ WHEN SUBMITTING THIS DOCUMENT, PLEASE INCLUDE ALL PAGES OF THE AGREEMENT WITH THIS SIGNATURE PAGE