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Northwestern University Data Use Agreement

Guidelines for data exchange: all data exchanges are in accordance with the conditions agreed upon by research participants; 2) applicable laws and regulations, and; 3) the principle that individual sites within the network have final authority over the use or sharing of their website data by project. These principles aim to maximize and exchange GWAS data generated by eMERGE members between and among other members and with the broader scientific community, without compromising the security of data or the confidentiality of information relating to individuals whose data and/or samples are used for research. Confidentiality Statement: By signing this agreement, the authorized official representing a member of the eMERGE network certifies that he and the principal investigators, fellows, students and researchers (together the “representatives of the network members”) working on eMERGE-related projects, are aware of the confidentiality of the data on the research participants managed by the member and the need to respect that confidentiality. Data sharing responsibilities: Key investigators at each eMERGE clinical site can define data to conduct activities defined in research studies (eMERGE) sanctioned by eMERGE and divided as follows: (1) distribution via dbGaP; (2) distribution within the eMERGE network; and/or (3) distribution at the eMERGE coordinating centre. The eMERGE data to be published in eMERGE will only be provided to members of the eMERGE network who have signed this agreement. All members of the eMERGE network and the eMERGE Coordination Centre can approve eMERGE data from all member sites and transmit this eMERGE data with documented permission prior to each filing of the contributor website (s) to dbGaP and/or other databases managed by the National Institutes of Health. Each member of the eMERGE network can transmit their own data to external collaborators without the consent of other members. If eMERGE data received by one member is shared externally by another member, the prior consent of the member providing the eMERGE data must be collected and documented. Members who share eMERGE data outside must also ensure that any external recipient of eMERGE data accepts the same restrictions and conditions that apply to members and members` representatives with respect to the use and disclosure of eMERGE data, as described in this agreement or prescribed by law. The member of the eMERGE network agrees to ensure that its network members do not use, divy or transmit eMERGE data to persons who are not members of the eMERGE network, unless this agreement permits or prescribes it by law.