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Data Application Renewal Instructions

Principal investigators (PIs) seeking renewal for access to NIAGADS datasets are urged to review the following information before initiating a data access request.

By signing and appending the Data Use Certification Document, it is understood that the Principal Investigator and the Institution will abide by the policies and standards set forth in that document.

All documents including the Data Use Certification Document and those listed below should upload to the Data Access Request section of the NIAGADS website, found at www.niagads.org/data/request.

Instructions for Principal Investigators Renewing Authorized Access to NIAGADS Datasets

Renewal Application-Specific Documents

Please complete the Renewal Template and return it to niagads@pennmedicine.upenn.edu.

Research Summary

Describe major findings as a result of using data obtained from NIAGADS over the past year. Describe any secondary data resulting from use of NIAGADS data. These data must be returned back to NIAGADS in accord with the NIH Genomics Sharing Policy, the NIAGADS Data Distribution Agreement and the NIA AD Genomics Sharing Plan.

Publications

List publications resulting from analysis of data obtained from NIAGADS over the past year. Please include manuscripts accepted for publication or in press. List any accepted publications including the PubMed Central Identification Number (PMCID).

Scientific Presentations

List scientific presentations resulting from use of data obtained from NIAGADS.

Supplemental Documentation

The following four (4) REQUIRED documents must be uploaded to NIAGADS application system in order for the Data Access Request to be considered complete.

IRB approval in compliance with the NIH Genomics Data Sharing Policy (GDS)

The Investigator must submit a current IRB approval for the proposed project that will use NIAGADS data.

Derived/Secondary Data Return Plan

The Investigator must describe the derived/secondary data that will be returned to the NIA Genetics of Alzheimer’s Disease Data Storage Site (NIAGADS): see Requirements for Secondary Data Return Plan (SDRP) (scrollhelp.site)

National Institute of Aging (NIA) Genomic Data Sharing Plan

This document must be signed by the Investigator and his/her Institutional Signing Official: see

https://www.nia.nih.gov/research/dn/alzheimers-disease-genomics-sharing-plan

The NIAGADS Data Distribution Agreement

This document must be signed by the Investigator and his/her Institutional Signing Official: see NIAGADS-DDA

Accessing Additional Datasets After Initial Approval

Investigators who would like to access additional dataset(s) for use in an existing approved project should:

  1. Revise the existing approved project request to include the new datasets and

  2. Update the Research Use Statement as appropriate.

Investigators do not need to submit a new project request unless the dataset will be used for research outside of the scope of the approved Research Use Statement.

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