CBB post-mortem hippocampal short-RNA-seq

CBB/SAGSC transcriptome-genome data policy

Data Access Policy for CBB/SAGSC Transcriptome-Genome Data Data contributed to the EGA Portal is made available under a tiered system designed to protect the privacy and confidentiality of study participants. Data are available under Controlled Access to comply with ethical guidelines for protection of human subjects. Investigators wishing to use the Controlled-Access data (“Data”) must: (1) Contact the CBB/SAGSC Transcriptome-Genome Data Access Committee at athanasios.zovoilis@uleth.ca (2) Provide a detailed description of their intended data use, with the affiliation and name of the lead investigator (3-5 paragraphs describing the overarching research objectives and design: goals, main testable hypothesis, and procedures.) This statement should be submitted in English. (3) Agree to comply with all Data Access Terms and Conditions, and any specific data use limitations by signing a Data Use Agreement co-signed by an authorized Signing Official (SO) from their institution. (4) Provide the list of collaborators (including name, and email address) who will be accessing these data to perform the proposed research. If a collaborator is from a different institution than the PI on the request, that individual must complete a separate data access request. Data access will be granted for a determined period of time. Investigators can apply to extend/renew access to these data to complete the approved research. To extend/renew access to these data, investigators must fulfill all the following requirements: (1) Submit an annual progress report describing the research performed with these data by the approved users in the previous period as well as the intended use of the data for the next period (1-3 paragraphs). (2) Provide an updated list of collaborators (including name, and email address, and institution) who will be accessing these data to perform the proposed research. (3) Confirm continued agreement with all Data Agreement Terms and Conditions, and any specific data use limitations. The PI is responsible for ensuring that user reports are filed and that all investigators adhere to these terms. Controlled Data may not be redistributed. Upon completion of the project or termination of data access permissions, users are required to erase all locally stored copies of the data. Any misuse of data will result in termination of access/use privilege to these data in EGA. In addition, misuse will be reported to both the researcher and their institution. If an investigator changes institution, (s)he will submit a new Data Use Certificate signed by an authorized official from the new institution. The Data Access Committee reserved the right to deny access to data to applicants in jurisdictions that according to the committee’s opinion lack legislation or infrastructure that will ensure beyond any reasonable doubt protection of privacy and confidentiality of this data or whenever the intended use is not in alignment with the consent provided by the study participants and the respective CBB/Univ. of Calgary and SAGSC/ Univ.of Lethbridge ethics committee’s approvals. Controlled Access Data Terms and Conditions In this document “You” refers to the data requestor. Data Access Terms and Conditions 1) Research Use a) You agree to use the Data exclusively for research purpose(s), and in accordance with applicable national, tribal, state, and local laws and any relevant institutional policies/procedures including IRB/ethics oversight. Any other use of the Data is prohibited. b) You further agree to respect any research use limitations identified by the Data Contributor(s) and indicated with the Data description. 2) Confidentiality and Data Security a) You agree to keep the Data confidential and not to distribute it in any form to any entity or individual other than to collaborators who have signed the agreement subject to applicable law. b) You agree to protect and retain control over the Data and follow appropriate physical and electronic security protection measures. c) You agree not to use the Data, or any other information, to identify or contact individual participants from whom Data were collected. d) You agree to destroy all local copies of the Data as soon as the research project(s) have been concluded. e) You agree to report any misuse or data release, intentional or inadvertent, to the Data Access Committee within 5 business days by emailing athanasios.zovoilis@uleth.ca. 3) Dissemination of Research Results and Acknowledgment a) You agree to submit an annual progress update or project closure report. b) In recognition of the effort that Data contributor(s) made in obtaining the Data, should you wish to publish your results, based in whole or part on an analysis of these Data, you agree to acknowledge the Data Contributor(s) and the source of these Data on Synapse per the instructions and acknowledgement statement(s) that will be provided with the Data Agreement. 4) The Data contributor retains ownership of the Data The Data is supplied “AS IS” and Data Contributor makes no representations or warranties, expressed or implied, regarding the Data, including but not limited to the marketability, use or fitness for any particular purpose, or that such Data do not infringe upon any third party property rights. Further, Data contributor shall not be liable for special consequential or incidental damages. 5) Data requestor and Signing Official* a) You understand that by using this Data, you agree to the general Terms of Use and guiding principles for responsible research as described in Data Use Agreement. b) You agree that if you change institution, you will submit a new Data Use Agreement signed by an authorized official from your new institution. c) You and your Institutional Signing Official certify your agreement to the principles, policies and procedures for use of these Data as articulated in this document. Failure to comply with the terms of this Data Use Agreement may result in termination of all current data access and/or suspension of the PI and all associated key personnel and collaborators from submitting new Data Access Request for a period to be determined. Repeated violations or unresponsiveness to the committee requests may result in further measures.