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UCSF MAC DATA USE AGREEMENT - UCSF MEMORY AND AGING CENTER

By Sandra Reed,2014-06-26 09:12
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UCSF MAC DATA USE AGREEMENT - UCSF MEMORY AND AGING CENTER

    University of California

    San Francisco

    Department of Neurology

    Memory and Aging Center

    UCSF MEMORY AND AGING CENTER

    DATA USE AGREEMENT FOR LIMITED DATA SET(S)

    This Data Use Agreement (“Agreement”) is between the Memory and Aging Center at the University of California, San Francisco (MAC) and the Data Recipient (noted in Section B) and is effective as of the “Effective Date” (noted in Section H).

    Both parties are committed to complying with local, state, and federal laws and regulations (including the Privacy Rule under the Health Insurance Portability and Accountability Act [HIPAA] of 1996 -(P.L. 104-191), 42 U.S.C. Section 1320d, et. seq., and regulations promulgated there under, as may be amended from time to time) relating to privacy, security and confidentiality of the Limited Data Set.

    A. Name of Entity Releasing the Limited Data Set:

    Memory and Aging Center

    Department of Neurology

    University of California, San Francisco

    San Francisco, California

    United States of America

    B. Name of Recipient of the Data Set:

    C. Preparation of the Limited Data Set.

    The Limited Data Set provided under this Agreement excludes identifiers as required by

    the HIPAA Privacy Regulations for the creation of a Limited Data Set and does not

    contain any of the following elements:

    ; Names

    ; Street or postal address, other than town or city, state or zip code

    ; Telephone numbers

    ; Fax numbers

    ; Electronic mail addresses

    ; Social Security numbers

    ; Medical record numbers

    ; Health plan beneficiary numbers

    ; Account numbers

    ; Certificate/license numbers

    ; Vehicle identifiers and serial numbers, including license plate numbers

    ; Device identifiers and serial numbers

    350 PARNASSUS AVE, STE. 905, SAN FRANCISCO, CA 94117 • TEL 415.476.6880 FAX 415.476.4800 • MEMORY.UCSF.EDU WWW.YOUTUBE.COM/UCSFMEMORYANDAGING

; Web Universal Resource Locators (URLs)

    ; Internet Protocol (IP) address numbers

    ; Biometric identifiers, including finger and voice prints

    ; Full face photographic images and any other comparable images

    D. Purpose of Limited Data Set Disclosure

    The Recipient of the Limited Data Set (named in Section B above) and the Agents to whom the Recipient provides the Limited Data Set to are permitted to use and disclose the Limited Data Set for the following purpose(s):

    ; Human subjects research

    ; Educational activities (i.e., teaching activities, development of clinical guidelines)

    E. Responsibilities of the Recipient.

    The Recipient of the Limited Data Set (named in Section B above) and the Agents to whom the Recipient provides the Limited Data Set to agree to:

    1. Use or disclose the Limited Data Set only as permitted by this Agreement or as

    required by law.

    2. Use appropriate safeguards to prevent the use or disclosure of the Limited Data

    Set other than as permitted by this Agreement.

    3. Require all data Recipients to review and sign a Data Use Agreement for Limited

    Data Set(s). If it is not feasible for all Agents (including subcontractors, students,

    fellows, analysts, etc.) to review and sign a Data Use Agreement for Limited Data

    Set(s), the Recipient must ensure that any Agents to whom the Recipient provides

    the Limited Data Set(s) agree to the same conditions and restrictions on the use

    and disclosure of the Limited Data Set(s) that apply to the Recipient through this

    Agreement. Individuals not working directly with the Recipient should obtain the

    Limited Data Set(s) directly from the MAC at the University of California, San

    Francisco and complete a Data Use Agreement for Limited Data Set(s). 4. Not attempt to use the information in the Limited Data Set to identify or contact

    the persons from whom the data originated or their relatives, employers or

    household members.

    5. Accept all responsibility for data analysis, results from analyses and any

    consequences resulting from breaching study participant privacy in connection

    with the analysis.

    6. Obtain approval from the Recipient's local IRB, if required, before the initiation

    of any analyses.

    7. Cite and acknowledge the MAC Project for the source data set and its funding

    sources in all abstracts, presentations and publications, using language detailed in

    the MAC Publication Guidelines (see Appendix A), and make a good faith effort

    to follow the other provisions of these guidelines.

    8. Report any use or disclosure of the Limited Data Set not permitted by this

    Agreement in writing to the MAC (email: rgearhart@memory.ucsf.edu) within

    five (5) days after the Recipient becomes aware of the unauthorized use or

    disclosure.

    Page 2 of 4

    F. Term and Termination

    1. Term. The term of this Agreement shall commence on the Effective Date (noted

    in Section H below) and shall continue for as long as the Recipient and their

    Agents retain the Limited Data Set, unless terminated sooner as set forth in this

    Agreement.

    2. Termination by Recipient. The Recipient may terminate this Agreement at any

    time by notifying the University of California, San Francisco and returning and/or

    destroying the Limited Data Set and any copies of the Limited Data Set. 3. Termination by University of California, San Francisco. The University of

    California, San Francisco may terminate this Agreement at any time by blocking

    the Recipient’s access to the MAC online resource management system as well as

    access to any additional data sets, images and other study materials. 4. Termination for Cause. Upon the University of California, San Francisco's

    knowledge of a material breach of this Agreement by the Recipient (and/or the

    Recipient's Agents), the University of California, San Francisco shall either

    provide an opportunity for the Recipient to cure the breach or end the violation

    OR terminate this Agreement if the Recipient does not satisfactorily cure the

    breach or end the violation within the timeframe set forth and to the satisfaction of

    the University of California, San Francisco. The University of California, San

    Francisco may immediately terminate this Agreement if cure is not possible by

    blocking the Recipient's access to the MAC online resource management system

    as well as access to any additional data sets, images and other study materials.

    G. Miscellaneous

    1. Regulatory references. A reference in this Agreement to a section in the HIPAA

    Privacy Regulations means the section as in effect or as amended. 2. Amendment. The Parties agree to take action as is necessary to amend this

    Agreement from time to time as is necessary for the University of California, San

    Francisco to comply with changes in local, state and federal laws and regulations

    relating to privacy, security and confidentiality of the Limited Data Set. 3. Interpretation. Any ambiguity in this Agreement shall be resolved to permit the

    University of California, San Francisco to comply with local, state and federal

    laws and regulations relating to privacy, security and confidentiality of the

    Limited Data Set.

    H. Agreement Execution. By signing “I Agree” below, the Recipient is certifying that he/she as well as any Agents to whom the Recipient provides the Limited Data Set, agrees to use or disclose the information contained in the Limited Data Set only as permitted in Sections D and E in this Agreement.

    I agree to use or disclose the data only as permitted in this Agreement. ; Effective Date of Data Use Agreement:

    ; Data Recipient (First Name, Middle Initial, Last Name):

    ; Signature:

    Page 3 of 4

    APPENDIX:

    CITATION AND ACKNOWLEDGMENT OF THE UCSF MAC

    A. Required Citation and Acknowledgment of the UCSF Memory and Aging Center Project that was the Source of the Data Set

    As part of the Data Use Agreement, Recipients and their Agents agree that in publications using data from MAC Projects they will acknowledge the MAC Project as the source of the data, including the version number of the data sets used.

    1. Meeting abstracts.

    Methods section: “Data for these analyses are from the UCSF Memory and Aging Center

    [insert project title].”

    2. Papers and journal articles

    Methods section: “Data used in the preparation of this article were obtained from the

    UCSF Memory and Aging Center [insert project title] database. Specific data sets used

    are [version numbers].”

    Acknowledgement: “This manuscript was prepared using a UCSF Memory and Aging

    Center [insert project title] data set and does not necessarily reflect the opinions or views

    of the UCSF Memory and Aging Center investigators, the NIH or the private funding

    partners.”

    3. Presentations

    Methods section: “Data for these analyses are from a UCSF Memory and Aging Center

    [insert project title] data set.

    Acknowledgement: “This presentation was prepared using a UCSF Memory and Aging

    Center [insert project title] data set and does not necessarily reflect the opinions or views

    of the UCSF Memory and Aging Center investigators, the NIH or the private funding

    partners.”

    B. Informing the MAC about Publications based on MAC Project Related Data Recipients are requested to inform the MAC of articles published using MAC data so that publications can be tracked. Email Rosalie Gearhart at rgearhart@memory.ucsf.edu.

    The MAC will maintain an electronic archive of all MAC publications. PDFs of publications will be posted on the website if available and permitted by the copyright holder.

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