C9orf72 region reads of 3001 samples

• HMB DUO:0000006 (version: 2019-01-07)health or medical or biomedical researchThis data use permission indicates that use is allowed for health/medical/biomedical purposes; does not include the study of population origins or ancestry.
• RS DUO:0000012 (version: 2019-01-07)research specific restrictionsThis data use modifier indicates that use is limited to studies of a certain research type.
• NPUNCU DUO:0000018 (version: 2019-01-07)not for profit, non commercial use onlyThis data use modifier indicates that use of the data is limited to not-for-profit organizations and not-for-profit use, non-commercial use.
• PUB DUO:0000019 (version: 2019-01-07)publication requiredThis data use modifier indicates that requestor agrees to make results of studies using the data available to the larger scientific community.
• IRB DUO:0000021 (version: 2019-01-07)ethics approval requiredThis data use modifier indicates that the requestor must provide documentation of local IRB/ERB approval.
• TS DUO:0000025 (version: 2019-01-07)time limit on useThis data use modifier indicates that use is approved for a specific number of months.
• US DUO:0000026 (version: 2019-01-07)user specific restrictionThis data use modifier indicates that use is limited to use by approved users.
• PS DUO:0000027 (version: 2019-01-07)project specific restrictionThis data use modifier indicates that use is limited to use within an approved project.

A Data Sharing Agreement should be signed. An example of the Definitions and Terms and Conditions can be found under "Policy"

A Data Sharing Agreement should be signed. An example of the Definitions and Terms and Conditions can be found on the following lines. Definitions: “IRB/EC” means an institution review board or ethics Committee, providing independent scientific and ethical review with respect to research carried out with the Project Data. “Project Data” comprise GWAS and/or WGS -data obtained under IRB/EC protocol number 05/067 at the PROVIDER by the Principal Investigators. “Data Subject” refers to the person whose sample has been used to generate Project Data. “Publications” refers to, without limitation, articles published in print journals, electronic journals, reviews, books, posters and other written and verbal presentations of research. “RECIPIENT’s Institution” refers to the organizations with which the RECIPIENT is employed, affiliated or enrolled. “Research at RECIPIENT” refers to the research with the Project Data to be carried out by RECIPIENT as described in Appendix A to this Agreement A Data Sharing Agreement should be signed. An example of the Definitions and Terms and Conditions can be found under "Policy" Terms and Conditions: In signing this Agreement: 1. You agree to use Project Data only for the advancement of scientific and medical research and only for the Research at RECIPIENT. 2. You agree not to use, and not to allow use of, Project Data or any part thereof for the creation of products or services for sale or for any commercial purpose, whether sale by You or by any third party. 3. You acknowledge that the Project Data You receive is anonymized and that PROVIDER will under no circumstances provide You with any means to identify any Data Subject. You agree not to use Project Data to identify or contact individual Data Subjects. You agree to preserve, at all times, the confidentiality of all information on Data Subjects and Project Data. In particular, You undertake not to use, or attempt to use Project Data to compromise or otherwise infringe the confidentiality of information on Data Subjects and their right to privacy. 4. You agree to disclose Project Data only to those of Your employees who strictly need access to it for the purpose of the Research at RECIPIENT (“Authorized Recipients”), and who are bound by a duty of confidentiality which is at least as strict as provided for in this agreement. 5. You agree to ensure that any Authorized Recipient who has access to Project Data is advised of the confidentiality of Project Data. Upon request by PROVIDER, you agree to furnish PROVIDER the names of all Authorized Recipients who have gained access to Project Data. You agree that You are responsible for all breaches of confidentiality and compliance with the terms of this agreement by your Authorized Recipients. 6. You recognize that the Project Data disclosed hereunder may constitute personal data as defined in the General Data Protection Regulation (EU) 2016/679 (“GDPR”), including personal data concerning health. You will comply with all applicable laws, standards and regulations in using the Project Data, including the GDPR. You agree to store Project Data on a computer with adequate security controls that prevent unauthorized access to or loss of Project Data and to maintain appropriate control over the Project Data. You represent and warrant that You have in place, and You agree that You will keep having in place, state of the art technical and organizational security measures preventing unauthorized access and loss of Project Data or other forms of unlawful processing of Project Data, including without limitation, physical security measures, access controls, security and privacy technologies, security checks in relation to personnel, security incident response management and audit arrangements. You agree to promptly notify PROVIDER, through dr. J Veldink, of any violations of the foregoing and of any security breaches or loss of the Project Data. PROVIDER reserves the right to request and inspect Your data security and management measures to ensure the adequacy of data protection measures in countries outside the European Economic Area. 7. 7.1 PROVIDER ensures that the Project Data supplied under this Agreement have been collected in compliance with all applicable laws and regulations and the terms of ethical approval by the IRB/EC of PROVIDER in The Netherlands under protocol number 05/067, and that subject-consent includes the use of such anonymized Project Data for future research projects which include the Research at RECIPIENT. 7.2 Subject to the foregoing representation and warranty in 7.1 RECIPIENT represents and warrants that where the RECIPIENT is legally required to obtain ethical approvals, or subject-consent or approval of the pertinent medical ethical review board, for the proposed use of RECIPIENT’s data in combination with the Project Data, the same have been obtained and adhered to. 8. In the event the Project Data issued to You is subject to any Data Subject’s restrictions, PROVIDER shall inform You of any such restrictions and you hereby assume the obligation to abide by these restrictions. 9. For the avoidance of doubt, You will not perform any act which would lead to the re-identification of the Data Subjects concerned, including by linking different sets of data, comparing and processing data. You agree not to attempt to link Project Data to other information or archive data available for the data sets provided to You under this agreement, even if access to that data has been formally granted to you, or it is freely available without restriction, without the required consents and approvals. You agree to retain control over Project Data, and NOT TO DISTRIBUTE (individual-level or aggregated) Project Data provided under this agreement, in any form, to any entity or individual. 10. You agree not to transfer, share or disclose Project Data, in whole or in part, to or with any third party, whether or not this party is affiliated with Your institution, unless this third party is a named and approved (in writing) collaborator of the Principal Investigators. 11. You agree to use Project Data solely for the purpose of the Research at RECIPIENT. Any use of the Project Data for a new purpose or project or by another researcher will require a new application and approval in writing from PROVIDER. 12. You agree that if required by applicable law and/or regulations you will have obtained approval for the Research at RECIPIENT from an IRB/EC, or a waiver from such IRB/EC of the necessity of obtaining such approval, and you agree to provide Provider with a copy of such approval or waiver. 13. You agree to, when analyses result in newly estimated variables at an individual level (e.g. but not limited to haplotypes), submit these new variables for archiving with PROVIDER. This should be done no later than that the related paper will be submitted for publication. 14. You accept that Project Data will be reissued from time to time, with suitable versioning. If the reissue is at the request of Data Subject’s and/or subject to other ethical scrutiny, upon PROVIDER’s request You will destroy earlier versions of the Project Data. Upon PROVIDER’s first request, RECIPIENT undertakes to no longer use for the Research at RECIPIENT, Project Data of individuals who have notified PROVIDER that they no longer wish for their personal data to be processed. 15. Regarding any publication following from the Research at RECIPIENT, you agree to abide by the terms of Appendix C and the following terms: papers which include analyses using Project Data, Principal Investigators will be listed as co-authors. 16. You accept that the Project Data is provided “as is” and WITHOUT ANY WARRANTIES, EXPRESS OR IMPLIED, INCLUDING ANY WARRANTY OF FITNESS FOR A PARTICULAR PURPOSE, OR THAT RECIPIENT’S USE OF THE DATA WILL NOT INFRINGE ANY PATENT, COPYRIGHT, TRADEMARK, OR OTHER PROPRIETARY RIGHTS. In no event shall PROVIDER or the party where the Project Data was generated, their personnel and their subsidiaries be liable for any use, storage and disposal of the Project Data by RECIPIENT. 17. You acknowledge that the Project Data are made available to you under this Agreement on the title of non-transferable, non-sub-licensable, unassignable, non-exclusive license for the purpose of the Research at RECIPIENT. You recognize that nothing in this Agreement shall operate to transfer to You any rights, including but not limited to intellectual property rights and database rights, in or relating to Project Data. All Project Data received by RECIPIENT from PROVIDER in connection with this Agreement shall be and remain the sole property of either PROVIDER or the party where the Project Data was generated. 18. You accept that this Agreement will terminate immediately upon the earlier of: a) the third anniversary of the starting date (the date of last signature) of this Agreement; or b) completion of the Research at RECIPIENT; or c) any breach of this Agreement by You 19. Upon termination of this Agreement, You shall, at the discretion of Provider, either return or destroy all Project Data, and You shall not retain any copies of such Project Data; provided, however, that Project Data may be retained for continued use by You to the extent that any portion of such Project Data (i) is incorporated in any publications or draft publications or any other derivative works generated by, or for, you, only to the extent any such retained Project Data shall remain subject to the disclosure and use restrictions set forth herein. 20. You agree that You will submit a report to the Principal Investigators, if requested, on completion of the Research at RECIPIENT with Project Data. Such report will include the data resulting from your study of the Project Data. The Principal Investigators agree to treat the report and all information, data, results, and conclusions contained within such report as confidential information. 21. This agreement shall be construed, interpreted and governed by the laws of the Netherlands and shall be subject to the exclusive jurisdiction of the district court of Midden-Nederland, the Netherlands.