DNA whole-exome sequencing data from patients with metastatic basal cell carcinoma

Terms and conditions, as established by the Melanoma Institute Australia, that users wishing to access this dataset must agree to meet.

Data-Use Agreement Please read the following statements and if you accept the terms of the agreement, return a signed copy to the Melanoma Institute Australia (MIA) Research Committee Secretary at research@melanoma.org.au Purpose: This agreement has been established to outline your requirements under Australian Law (Privacy Act) and to comply with HREC Approvals, Research Code of Conduct and MIA Research Policy. It is of utmost importance to protect the identities of cancer patients. Every effort has been made to exclude identifying information on individual patients. Certain demographic information - such as sex, race, etc. - has been included for research purposes. All research results must be presented or published in a manner that ensures that no individual can be identified. In order for the MIA to provide access to this Research Data, it is necessary that you agree to the following provisions. 1 The research data will be stored safely and securely. The lead researcher of the project at the collaborating institution is responsible for ensuring the Research Data is stored safely and securely. 2 I will not use - or permit others to use - the data in any way other than for statistical reporting and analysis for the approved research purposes. I must notify the Melanoma Institute Australia Research Committee (MIARC) Secretary if I discover that there has been any other use of the data. 3 I will not present or publish data in which an individual patient can be identified. 4 I will not attempt either to perform data linkage - or permit others to link - the data with individually identified records in another database without a Specific Human Ethics approval for the linkage. 5 I will not attempt to learn the identity of any patient whose disease data is contained in the supplied file(s). 6 If I inadvertently discover the identity of any patient, then (a) I will make no use of this knowledge, (b) I will notify the MIARC Secretary of the incident, and (c) I will inform no one else of the discovered identity. 7 I will not release - or permit others to release - the data - in full or in part - to any other person except with the written approval of the MIA Research Committee. In particular, all members of a research team who have access to the data must sign to this data-use agreement. 8 I will use appropriate safeguards to prevent use or disclosure of the information other than as provided for by this data-use agreement. If accessing the data from a centralized location on a time sharing computer system or any shared network drives, I will not share my logon name or password with any other individuals. I will also not allow any other individuals to use my computer account after I have logged on with my logon name and password. 9 If I leave the organisation and would like to continue to work on the research project, I will contact research@melanoma.org.au to find out if this is possible. I will nominate how long I need access for and my supervisor will need to approve this. 10 Any publications which include the Research data will acknowledge the source of data as the Melanoma Research Database at Melanoma Institute Australia. All publications should acknowledge the University of Sydney, Melanoma Institute Australia and the Sydney Local Health District as owners of the database. Suggested wording - We would like to thank the University of Sydney, Melanoma Institute Australia and the Sydney Local Health District for the data they have provided for this research. 11 At the conclusion of the project I will ensure that after having met any archiving requirements the data is destroyed. 12 My signature indicates that I agree to comply with the above stated provisions. AGREEMENT TO TERMS OF RELEASE OF CONFIDENTIAL MELANOMA INSTITUTE RESEARCH DATA I, ________________[full name], hereby agree to the terms and conditions relating to the release of the confidential Melanoma Institute Research data for use in: Project Title: _____________________________________________________________________ Signature _____________________________________________________________________ Date