NAPS Data & Biospecimen Data Request Form

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Required format:

TTUFFN7GuLT4TWCIkPMfT2BrRPTwbn8

Please submit your request by the 1^st of even-numbered months (February, April, June, August, October, & December) for review by the Data & Biospecimen Committee in odd numbered months. If the submission includes a request for biofluid samples, neuroimaging data, or polysomnogram data, respective NAPS Core leaders will also review the request prior to approval.

Project title		Date
Full Name		Mailing address
Title
Institution		Shipping address
Email
Phone		Request type
Fax

NOTE: Neuroimaging data will be obtained through LONI if data request is approved

NOTE: If requesting an EDF of PSGs, this data will be obtained through NSRR if data request is approved

NOTE: Biofluids are stored at NCRAD and will require a Material Transfer Agreement with your institution if this data request is approved. NCRAD distribution fees associated with this data request will be the responsibility of the requestor. The current NCRAD price structure is available at https://ncrad.iu.edu/access-samples

Link to Data Access Policy ( formerly called Data Request Policy)

2.1: Purpose of request(select all that apply)

2.2: Level of analysis (select one)

2.3: Protocol: Attach a protocol (preferably 1 page, maximum 3 pages) including
A) Aims and Hypotheses;
B) Requested Data/Biospecimens;
C) Analytic plan;
D) Power calculations.

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2.3.a. Aims

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2.4: Institutional Review Board (select one)

NOTE: Internal investigators from enrolling sites may list their local NAPS IRB number. It is the responsibility of the requesting investigator to ensure that the proposed project is covered by their local IRB

NOTE: For Level 3 requests, the IRB approval or exemption should be at the same institution as the investigator making the request.

2.5: Billing contact for processing and shipping fees

Name:

Phone number:

Email:

1) I acknowledge I have read the current Data Sharing and Publication Policy for the NAPS
Consortium. I agree to abide by the requirements in that Policy, including the specific requirements listed
below.

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2) I will provide documentation of institutional review board (IRB) approval valid for the analysis of
NAPS Consortium data (or acknowledgment from the IRB that receiving coded data without access to
identifiers is not considered research requiring review).

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3) I will use the data and/or biospecimens received only for research purposes and will not attempt to
identify any individual participant. I will not share NAPS Consortium data or biospecimens with a third
party. I will not attempt to combine data or biospecimens with a third party. (Note: ID numbers are unique
for each data request).

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4) I will take all precautions to ensure confidentiality for the data and/or biospecimens that I receive. I
am providing assurance that I have the ability to secure the data and/or biospecimens received in
accordance with the most stringent protections possible compliant with local IRB and Health Insurance
Portability and Accountability Act (HIPAA for US sites) standards for such sensitive data.

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5) I will return any new data generated through analyses of the data/biospecimens to the NAPS
Consortium for possible inclusion into the project database. I understand that these data will be made
available for distribution, after a 6-month embargo.

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6) I agree to prepare a manuscript within 1 year. For Level 1 and 2 requests: I will include "on behalf of the
NAPS Consortium" as an author. For Level 3 requests: I will include "NAPS Consortium Investigators" in an appendix, if not already a co-author.

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7) I agree to include the following statement in any manuscripts or presentations that may result from research using the data/biospecimens:
"Data collection and dissemination of the data presented in this manuscript were supported by the NAPS Consortium (R34 AG056639 and U19 AG071754 funded by the National Institutes of Health), the National Centralized Repository for Alzheimer's Disease and Related Dementias (U24 AG021886), and the National Alzheimer's Coordinating Center (U24 AG072122). The authors acknowledge the invaluable contributions of the participants in NAPS Consortium as well as the assistance of the support staffs at each of the participating sites."

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8) I agree to submit any manuscript(s) to the Data and Biospecimens Committee at least 30 days
prior to submission for publication. I agree to make changes requested by the Committee or by the NAPS
Consortium.

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9) For any publications that result from the data/biospecimens, I will comply with National Institutes
for Health (NIH) public access policies, including obtaining a PubMedCentral ID (PMCID) linked with the
relevant NIH funding details. I agree to notify the NAPS Consortium as soon as possible after any
publication(s) that result from the requested data and/or biospecimens, with a PubMedCentral ID
(PMCID) and full reference.

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10) If funding results from data or biospecimens from the NAPS Consortium, now or in the future, I
agree to notify the Data and Biospecimens Committee with details (grant title, sponsor, number, dollar
total, and dates) so that the NAPS Consortium may report productivity derived from our resources to NIH.

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11) I understand that the NAPS Consortium receives funding from the National Institutes of Health (NIH), and that any manuscript resulting from the analysis of NAPS study data is subject to the NIH Public Access Policy. I agree to ensure that any such manuscript is made publicly available in PubMed Central upon the Official Date of Publication, as defined by the NIH. I understand that the NAPS Consortium will cover open access publication fees for Level 1 data requests and that it would be my responsibility to pay any associated open access publication fees for Level 2 and Level 3 NAPS data requests..

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12) I acknowledge that my name, project title, and study aims may be published on the NAPS Consortium website.

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13) I acknowledge that if biofluids are being requested as part of this project, it will be my responsibility to pay the NCRAD distribution fees and related shipping charges.

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14) I acknowledge that it is my responsibility to obtain IRB approval or IRB exemption for this project. I understand that it is my obligation to pay any associated local IRB fees and/or contracting fees in the case of Level 2 or Level 3 requests.

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15) I understand that I may have no more than five open data requests at any given time.

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Signature

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Date

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