RNA sequencing of end-stage kidney disease patients with COVID-19

Data access policy for the RNA sequencing data derived from end-stage kidney disease patients with COVID-19.

ESKD COVID-19 RNA-seq Data Access Agreement This agreement governs the terms on which access will be granted to the RNA sequencing data derived from end-stage kidney disease patients with COVID-19 at Imperial College London, deposited at the European Genome-phenome Archive (EGA) under the title “Multi-omics identify falling plasma LRRC15 as a COVID-19 severity marker and persistent pro-thrombotic signals in convalescence”. Note that this document does not pertain to the individual-level counts data, which is available without restriction from zenodo (https://doi.org/10.5281/zenodo.6497251). 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 refers to controlled access data (the Data). Under this Agreement, the Data is pseudonymised. 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. Data Controller refers to the Institution responsible for the generation of the Data and its pseudonymisation. 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. User Institution means the organisation at which the User is employed, affiliated or enrolled. GDPR refers to the General Data Protection Regulation (https://gdpr-info.eu/). This data access agreement makes both parties compliant with the Regulation (EU) 2016/679 of the European Parliament and of the Council (the GDPR). 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 sample donors. 2. You agree not to use 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 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 that in handling this Data You will follow an up-to-date information technology (IT) policy that must include, at a minimum, the following items: a. Logging and auditing of Access to the Data and to the computer network; b. Password protection to computer network and/or strong data encryption; c. Virus and malware protection to computers on the computer network; d. Secure backup procedure. 6. 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 programme management. Should You wish to share the Data with a collaborator within the same Institution, the third party must make a separate application for access to the Data. 7. You may not transfer any information included in the Data to anyone unless specifically designated in the Research Project, or by prior specific or general written authorisation of the Data Controller(s) responsible for the generation of the original Data in each case. 8. 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. 9. 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. 10. You agree to acknowledge the contribution of the Data Controller(s) in all oral and written presentations, disclosures, and publications resulting from all analyses of the Data. In the case of a publication, the User must cite the original publication describing the Data. 11. You accept that the Data Controller(s), 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. c) bear no responsibility for the further analysis or interpretation of these Data over and above that published by the Data Controller(s). 12. You agree to hold the Data Subject(s) and Data Controller(s) harmless and to defend and indemnify all these parties against all liabilities, demands, damages, expenses, and losses arising out of Your use for any Purpose of the Data. 13. 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. 14. 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. 15. You accept that it may be necessary for the Data Controller(s) 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 Data Controller(s) or their 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. 16. 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 Institution. 17. You accept that the Data is protected by and subject to international laws, including but not limited to GDPR and the UK Data Protection Act 1998, 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. 18. In case of a breach of security resulting from ‘accidental’ use of Data by You and Your Authorised Personnel, which leads to disclosure of Data, then You must report this to Data Controller(s) within 72 hours maximum, and follow any relevant rule as provided by the GDPR. 19. 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. 20. This agreement shall be construed, interpreted and governed by the laws of England and Wales and shall be subject to the non-exclusive jurisdiction of the English courts.   Application: 1. Contact details Name: Position: Institution’s Legal Name: Institutional Postal Address: Institutional E-mail Address: 2. Title of the proposed research project 3. Short abstract for the proposed research project Please provide a short abstract (max 300 words) including a description of the project, its main questions and aims, and its intended duration. Use of the Data, if approved, must fall under the framework of the described project. 4. Justification for use of raw sequence data Individual-level counts data is available without restriction from zenodo (https://doi.org/10.5281/zenodo.6497251), which should be sufficient for most purposes. Please explain why the proposed research project additionally requires access to the raw sequence data deposited at the EGA.   Agreement: I have read, understood and agree to abide by the terms and conditions stipulated in this Data Access Agreement. For and on behalf of User: Name of Applicant(s): _____________________________________ _____________________________________ Signature of Applicant(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