Targeted long-read snIso-Seq of the human brain in neurodegenerative diseases

• HMB DUO:0000006 (version: 2021-02-23)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.
• US DUO:0000026 (version: 2021-02-23)user specific restrictionThis data use modifier indicates that use is limited to use by approved users.

Chun Lab Human Data Access Policy

These terms and conditions govern access to the managed access to which the User Institution has requested access. The User Institution agrees to be bound by these terms and conditions. Definitions Authorized Personnel: The individuals at the User Institution to whom the Chun Lab DAC grants access to the Data. This includes the User, the individuals listed on the Signature Page and any other individuals for whom the User Institution subsequently requests access to the Data. Details of the initial Authorized Personnel are listed in the Signature Page. Data: The managed access datasets to which the User Institution has requested access. Data Producers: The Chun Lab DAC and the collaborators listed in the publication author list responsible for the development, organization, and oversight of these Data. External Collaborator: A collaborator of the User, working for an institution other than the User Institution. Project: The project for which the User Institution has requested access to these Data. A description of the Project is included on the Signature Page. Publications: Includes, without limitation, articles published in print journals, electronic journals, reviews, books, posters and other written and verbal presentations of research. Research Participant: An individual whose data form part of these Data. Research Purposes: Shall mean research that is seeking to advance the understanding of genetics and genomics, including the treatment of disorders, and work on statistical methods that may be applied to such research. User: The principal investigator for the Project. User Institution(s): The Institution that has requested access to the Data. Chun Lab DAC: Data Access Committee, Laboratory of Jerold Chun, Sanford Burnham Prebys Medical Discovery Institute, La Jolla, California Terms 1. The User Institution agrees to only use these Data for the purpose of the Project (described on the Signature Page) and only for Research Purposes. The User Institution further agrees that it will only use these Data for Research Purposes which are within the limitations set in the Dataset Details. 2. The User Institution agrees to preserve, at all times, the confidentiality of these Data. In particular, it undertakes not to use, or attempt to use these Data to compromise or otherwise infringe the confidentiality of information on Research Participants. Without prejudice to the generality of the foregoing, the User Institution agrees to use at least the measures set out the Dataset Details to protect these Data. 3. The User Institution agrees to protect the confidentiality of Research Participants in any research papers or publications that they prepare by taking all reasonable care to limit the possibility of identification. 4. The User Institution agrees not to link or combine these Data to other information or archived data available in a way that could re-identify the Research Participants, even if access to that data has been formally granted to the User Institution or is freely available without restriction. 5. The User Institution agrees only to transfer or disclose these Data, in whole or part, or any material derived from these Data, to the Authorized Personnel. Should the User Institution wish to share these Data with an External Collaborator, the External Collaborator must complete a separate application for access to these Data. 6. The User Institutions agrees to recognize the contribution of the Data Producers by including a proper acknowledgement in all reports or publications resulting from the use of these Data. 7. The User Institution agrees to destroy/discard the Data held, once it is no longer used for the Project, unless obliged to retain the data for archival purposes in conformity with audit or legal requirements. 8. The User Institution will notify the Chun Lab DAC within 30 days of any changes or departures of Authorized Personnel. 9. The User Institution will notify the Chun Lab DAC prior to any significant changes to the protocol for the Project. 10. The User Institution will notify the Chun Lab DAC as soon as it becomes aware of a breach of the terms or conditions of this agreement. 11. This agreement by written notice. If this agreement terminates for any reason, the User Institution will be required to destroy any Data held, including copies and backup copies. This clause does not prevent the User Institution from retaining these data for archival purpose in conformity with audit or legal requirements. 12. The User Institution accepts that it may be necessary for the Data Producers to alter the terms of this agreement from time to time. As an example, this may include specific provisions relating to the Data required by Data Producers other than the Chun Lab DAC. In the event that changes are required, the Data Producers or their appointed agent will contact the User Institution to inform it of the changes and the User Institution may elect to accept the changes or terminate the agreement. 13. The User Institution agrees to distribute a copy of these terms to the Authorized Personnel. The User Institution will procure that the Authorized Personnel comply with the terms of this agreement.