ADRC Sequencing Data Return Procedure

Overview of the Required Steps

This document outlines steps required to access and match ADRC subject data with ADSP sequence data. Each ADRC should follow these 2 steps:

  1. Request data from NIAGADS and complete a Data Access Agreement with the University of Pennsylvania.
  2. Obtain NACC ID to map subjects to their ADSP ID.

Step 1. Request data from NIAGADS and complete a Data Access Agreement with the University of Pennsylvania.

Send an email to niagads@pennmedicine.upenn.edu to initiate a request for data. This email should include the Alzheimer’s Disease Center Director from the requesting Institution. Identify the ADRC and supply a signed copy of the Data Access Agreement (DAA) to be countersigned by the University of Pennsylvania. A copy of the DAA template can be found here: https://dss.niagads.org/wp-content/uploads/docs/NIAGADS_DAA_ADCreturn_2020.pdf.

ADRCs should work with NIAGADS to identify the data types you would like to receive and options for data transfer. All sequencing data will be mapped to GRCh38. Available data types include CRAMs, gVCFs, and joint-called genotypes in a project level VCF.

Step 2. Obtain ADSP ID to ADRC Patient ID mapping

Each participant included in the Alzheimer’s Disease Sequencing Project is assigned a unique identifier called an ADSP ID. Use the following steps to obtain the ADSP ID to ADRC Patient ID (PT ID) mapping.

  1. NIAGADS will provide a mapping of the NACC ID to the ADSP ID.
  2. ADRCs should contact NACC and request the mapping of the NACC ID to their own patient ID (PT ID).
  3. IDs can then be mapped from ADSP ID — NACC ID — PT ID.

For any questions, please contact NIAGADS at niagads@pennmedicine.upenn.edu.