Data Submission Overview
Clinicians at ADRCs collect clinical data using NACC forms and submit it to NACC. This data contributes to NACC's Uniform Data Set (UDS) which consists of rich multi-domain neurocognitive, clinical, and phenotypic data, and robust criteria-based diagnoses that are considered gold-standard by the field. Centers enroll participants who are healthy, at risk, and with dementia symptoms and then research experts collect standardized longitudinal data through annual visits using research tools co-developed and provided by NACC.
Below are the steps for data collection and submission to NACC.
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 the NACC submission system.
ADRCs are welcome to rebuild clinical forms in their EDC software of choice, following the NACC e-forms guidelines.
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.
When ready to submit data, ADRCs can reach out to [email protected]. NACC will create user accounts allowing access to the data submission system which supports:
Bulk submission: By uploading csv files that meets the NACC 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.
Non-standard image submission: Sites can submit non-SCAN compliant MRI and PET images directly to NACC.
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.
Additional Resources
Learn More
Overview of NACC data, including study population, collection methodology, and participant statistics
Forms
- Download forms and documentation
- Permission Request to use NACC forms in research outside of the ADRC program.
Clinical training
Administering the UDS
Other UDS training materials
Knight ADRC Public CDR® Training
Form B4: CDR® (links to Washington University in St. Louis)
NPI-Q Interviewer Certification Module
Form B5: NPI-Q Interviewer Certification Module
UDSv3
Clinician Walkthrough Webinar, Forms B8 and D1
Webinar recording related to Form B8: Neurological Examination Findings and Form D1: Clinician Diagnosis
Questions and answers about UDS3
Guidance for general, Neuropsychological battery and and Initial Visit Packet.
Questions and answers about the new Telephone Follow-up Packet
Guidance for general and Neuropsych test administration
Down Syndrome Module Training
ABC-DS Case Consensus Process
For reference, Alzheimer's Biomarkers Consortium — Down Syndrome (ABC-DS) case consensus process for determination of Alzheimer's Disease clinical status.
Training videos
Neuropsycological test administration guidance videos (a NACC account is mandatory to access this section).
Consensus Conference Form
Companion case consensus form that can be used alongside the recommended guidelines for case consensus outlined in the DS-Module guidebooks.
Administering the FTLD Module
Essential FTLD reference documents
Coding guidebook — Initital visit (pdf)
Detailed, annotated explanations of each form on an item-level basis, with instructions, operational definitions, and references
Coding guidebook — Follow-up visit (pdf)
Detailed, annotated explanations of each form on an item-level basis, with instructions, operational definitions, and references
Instructions for the neuropsychological battery (pdf)
Detailed instructions for administration and scoring of the neuropsychological tests
Presentations from the 2011 FTLD Module training meeting
Overview of the FTLD Module (PDF)
Presentation by David Knopman, MD, Chair of the ADRC FTLD working group
The family history/genetics form: A3F (PDF)
Presentation by NACC Director Walter A. Kukull, PhD
Neuropsych battery: Language tasks (PDF)
Presented by Sandra Weintraub, PhD
Neuropsych battery: Visuospatial tasks (PDF)
Presented by Joel Kramer, PsyD
Neuropsych battery: Behavioral assessments (Forms C2F – C6F) (PDF)
Presented by Kate Rankin, PhD
Clinical forms: B3F and B9F (PDF)
Supplemental neurological exam; bvFTD and PPA diagnoses. Presented by David Knopman, MD, Chair of the ADRC FTLD working group
Clinical form: B9F (PDF)
Overview of the PPA diagnosis. Presented by M.-Marsel Mesulam, MD; see also link to accompanying video, below
Submit mixed protocol MRI and PET image data
NACC collects and shares MRI and/or PET data that does not adhere to the SCAN/CLARiTI protocols or was collected prior to January 2021. This data has previously been labeled 'non-SCAN compliant', 'heterogeneous' or 'legacy' MRI and PET data. We have partnered with imaging experts such as Dr. DeCarli at the University of California at Davis, Dr. Beth Mormino at Stanford, and Dr. Tim Hohman at Vanderbilt University to clean, label, and produce harmonized analysis results for mixed protocol MRI and PET data that has been submitted to NACC.
Mixed protocol MRI and PET image data that has been submitted to NACC is freely available via NACC’s Data Front Door. Learn more about the mixed protocol imaging data available at NACC.
MRI and PET data that is ‘non-SCAN compliant’, ‘heterogeneous’ or ‘legacy’ data is considered mixed protocol MRI and PET data. NACC is actively collecting this data from ADRCs and working with NIA, the Imaging Core Steering Committee, and leaders in the imaging research community to process and release this data to researchers.
If you are interested in sending mixed protocol (non-SCAN compliant) MRI or PET images to NACC for the first time, please contact [email protected] to begin the setup process.
Please note: SCAN does not accept data that is not prospectively collected and SCAN-compliant. All data that that is `mixed protocol` or non-SCAN-compliant should be submitted to NACC.
Overview of the Submission Process for Mixed Protocol MRI and PET Data:
- Reach out to [email protected] and the NACC team will set up an ADRC-specific Amazon S3 bucket for your site to submit image data.
- NACC will send your center detailed instructions and login credentials via email to access the site-specific Amazon S3 bucket that was setup for your site.
- You will need to connect to the remote directory address NACC sends to you via email, upon setting up your site-specific Amazon S3 bucket, otherwise you may get a "could not connect" message.
Example remote directory address: naccimageraw/MRI/XX
Example remote directory address: naccimageraw/APET/XX
Example remote directory address: naccimageraw/TPET/XX Once connected to S3, move your files into the directory.
Uploaded files must be in zip format and should represent only one scan session (one patient on a specific date).
There's no need to organize files in folders/directories or name them in any particular way, the system restructures and renames files for consistency.
Files will be automatically picked up and processed by NACC, and the uploaded file will be removed once processing is complete.
Please note that NACC does not currently process PET images in the same way that MRI images are processed. These images will be processed when we add that capability to the new NACC Data Platform system. In the meantime, sites are still encouraged to submit mixed protocol PET data to NACC.
Additional specifications:
To send MRI and PET files to NACC, you'll need to use software that can connect to Amazon's S3 service. There's a good chance your current FTP software already supports an S3 connection; if not, there are many free options, including Cyberduck, WinSCP, and S3Browser.
If you submit a scan that matches a previously uploaded scan (based on PTID and study instance ID), the old information will be overwritten by information extracted from the new file. You can use this mechanism to "update" previously uploaded scans if necessary.
This data upload process does NOT apply to SCAN-compliant MRI or PET images. NACC does not currently accept SCAN-compliant MRI or PET images as the SCAN project collects these images. Please visit scan.naccdata.org to learn more.