Collect and Submit ADRC Data
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.
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 they should administer when possible, including the FTLD, LBD, and neuropathology modules. For a better understanding of which data is getting collected, see the NACC forms and documentation, which includes:
- 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 NACC's EDC guidelines:
- Forms must use the exact wording of the NACC paper forms.
- Forms may not have any local items inserted within a form. It is permissible to intersperse Center-specific material between forms, with the exception of the Neuropsychological Battery. The Neuropsychological battery tests must be administered in their original order.
- Forms must generate a data file matching the NACC submission format.
ADRCs may use their own local EDC for data collection:
- Go to the Electronic Data Capture and Submission Documentation site to download the REDCap Data Dictionary, Coding Guidebooks, Data Crosswalks, and a Data Element Dictionary for building or modifying an EDC to collect UDSv4 data.
ADRCs either build a database or leverage data collection tools with built-in storage.
There is no standard EDC prescribed by NACC. The data capture tool most commonly used among ADRCs is REDCap, and the ADRC community has shared their REDCap configurations, which is a great place to start for any ADRCs considering adoption of this tool.
When ready to submit data, ADRCs can reach out to NACC Support. 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, as described on this page.
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 Form for using NACC forms in research outside of the ADRC program
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 was previously labeled "non-SCAN compliant", "heterogeneous" or "legacy" MRI and PET data. We have partnered with imaging experts such as Dr. Charles 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 is submitted to 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 NACC Support 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.
Submission Process for Mixed Protocol MRI and PET Data
- Reach out to NACC Support and ask the NACC team to set up an ADRC-specific Amazon S3 bucket for your Center to submit image data.
- NACC will email your Center detailed instructions and login credentials, which you will use to access your site-specific Amazon S3 bucket.
- You will need to connect to the remote directory address NACC emails you (after setting up your site-specific Amazon S3 bucket), otherwise you may get a "could not connect" message. Here are some examples of remote directory addresses:
naccimageraw/MRI/XX
naccimageraw/APET/XX
naccimageraw/TPET/XX Once you are successfully connected to the S3 bucket, move your files into the directory.
Uploaded files must be in zip format and should represent only one scan session (i.e., 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 NACC Data Platform. 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.
Mixed protocol imaging data is available at NACC!
Mixed protocol MRI and PET image data that is submitted to NACC is freely available to researchers via NACC’s Data Front Door. To learn more about the mixed protocol imaging data available at NACC, submit a data request.