Resources for new ADRCs

Data submission overview

  • Collect clinical data

    Clinicians at ADRCs collect clinical data using NACC forms. All ADRCs administer the UDS, though there are additional forms that should be administered when possible, including the FTLD, LBD, and neuropathology modules. For a better understanding of data being collected, look through NACC forms and documentation which includes several types of documents:

    • Forms packets: The actual clinical forms that will be administered to patients.
    • Guidebooks: Instructions for clinicians describing how to administer the packets.
    • Data element dictionaries (DEDs): Technical details about form variables which can help you set up data storage.
    • Data templates: Technical details about the data structure expected by NACC's submission system.

    ADRCs are welcome to rebuild clinical forms in their EDC software of choice, following NACC's e-forms guidelines.

  • Store data locally

    ADRCs either build a database or leverage data collection tools with built-in storage. There is no standard tool prescribed by NACC. The data capture tool most commonly used among ADRCs is REDCap, and the ADRC community has shared their REDCap configurations which would be a great place to start for any ADRCs considering adoption of this tool.

  • Submit data to NACC

    When ready to submit data, ADRCs can reach out to nacchelp@uw.edu. NACC will create user accounts allowing access to the data submission system which supports:

    • Bulk submission: By uploading csv files that meets NACC's expected format, a large amount of data can be submitted at one time. For ADRCs using REDCap, 1Florida ADRC has created a great open-source tool called the NACCulator which converts REDCap data into NACC formats, simplifying the bulk submission process.
    • Data entry: A web-based interface allows data entry form-by-form.
  • Run QC

    After submission, data need to pass a full battery of QC "error checks" which can be kicked off from the NACC submission system. A list of errors is displayed, ADRCs fix the errors, re-submit data, and re-run error checks. This process is repeated until no errors are found, at which point the data is considered "finalized" and is ready for distribution to the research community.

Data Submission Workflow

Progress reports to NIA

ADRCs must annually submit progress reports to the NIA, following these guidelines. All of the needed files and instructions for the ADC Progress Reports are posted in this section. If you have questions or comments, please contact Emily Little (e2little@ucsd.edu) and Grayson Donley (grayson.donley@nih.gov) and cc: Nina Silverberg (silverbergn@mail.nih.gov) and Cerise Elliott (elliottce@mail.nih.gov).

Please note: For Table a7, NIA would like a Yes or No answer indicating whether your center does any work in the listed categories.

Working with an EAC

Each ADRC is required to have an external advisory committee (EAC) that meets annually to review the Center’s progress toward its stated goals. The committee’s charge is to evaluate the Center’s programs, research progress, communications, interactions with NACC, and other activities for which outside expertise is required or desirable.

In 2017, NIA formed an ad-hoc committee (John C. Morris, MD, Chair) to provide guidance on how an EAC should be organized and how it should conduct its work. The committee’s recommendations (see links above) may be useful to ADRCs not only in conducting an EAC visit, but also in preparing their NIA progress reports.

NIA biospecimen best practices

The National Institute of Aging convened a working group (Tatiana Foroud, PhD, and Thomas J. Montine, MD, PhD, Co-chairs) to provide guidance on best practices for the ADRCs in the acquisition, preparation, and storage of biospecimens. The group’s 2014 report can be found below, along with additional protocols from 2011 for induced pluripotent stem cells.

If you’re unable to find what you’re looking for, please don’t hesitate to contact us.

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University of Washington

NACC is funded by the National Institute on Aging (U01 AG016976) and located in the Department of Epidemiology at the University of Washington School of Public Health, Walter A. Kukull, Ph.D., Director. © 2021 University of Washington