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Appendix D: eMERGE Consortium Data Use Agreement
Pages 115-118

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From page 115...
... A fundamental question that eMERGE seeks to answer is whether electronic medical record (EMR) systems can serve as resources for such com plex genomic analysis of disease susceptibility and therapeutic outcomes, across diverse patient populations.
From page 116...
... Researchers with a wide range of expertise in genomics, statistics, ethics, informatics, and clinical medicine employed by an eMERGE Network Member participate in the eMERGE network, including: Principal Investigators of the eMERGE Clinical Sites, the Coordinating Center, the Genotyping Facilities, and Program Officials from the National Center for Biotechnology Information and the National Human Genome Research Institute. Data Sharing Guiding Principles: All data sharing will adhere to 1)
From page 117...
... Further, the Member agrees to return all eMERGE data to the eMERGE Coordinating Center or delete/destroy all electronic eMERGE data upon termination of its affiliation with the eMERGE Network and to notify the eMERGE Coordinating Center when it has done so. Limitations of Data Use: The eMERGE Network Member agrees to ensure that Network Member Representatives will only use eMERGE data in a manner that is consistent with any limitations that have been specified for in dividual studies by the disclosing Member and agreed to by the Steering Com mittee and shall ensure compliance with all applicable state and federal laws and regulations governing the use of such data including the Health Insurance Portability and Accountability Act of 1996 (HIPAA)
From page 118...
... 118 APPENDIX D Agreed to by: eMERGE Institution Authorized Official name and title (print) : ___________ Signature: _______________________________ Date: ________________ Read & Understood by: Network Member Representative name & title (print)


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