NACCID

NACCIDs are the universal unique identifiers for ADRC participants. These IDs enable all available data types for an individual participant to be linked. This includes data types stored directly within the NACC Data Platform, data types stored at partner repositories such as NCRAD, NIAGADS, and the ADKP, and data from affiliated studies.

NACCIDs are assigned at the time of consent

A new NACCID process is critical now that ADRC Participant data is becoming more multimodal as NACC expands interoperability with partner repositories and grows its affiliated study portfolio. The process enables additional verification to ensure NACCID fidelity, improves flexibility by allowing participant data types to be submitted to the NACC Data Platform in any order, and streamlines multimodal data integration.

The NACCID process requires ADRCs to assign NACCIDs at the time of consent for all new ADRC participants prior to any data submission to NACC. To assign a NACCID, ADRCs submit a simple form via the ADRC Portal. NACC then verifies the participant and returns a NACCID to the site within 24 hours. ADRCs can easily retrieve all NACCIDs via their ADRC Portal within the NACC Data Platform.

Once assigned, the NACCID will accompany every data type that is submitted for that participant to NACC, including UDS, Standardized Centralized Alzheimer’s disease and related dementias Neuroimaging (SCAN) initiative, Clarity in ADRD Research Through Imaging (CLARiTI), and affiliated study data.

NACCIDs should only be assigned to participants if they will participate in the UDS study at some point. This new process will not affect how ADRCs assign their own site-specific IDs or NIA GUIDs.

How to set up your ADRC with the new NACCID process

It is important that ADRCs plan carefully for this NACCID transition, as it may require workflow adjustments. Below, you will find a number of resources that NACC has developed in collaboration with the EDC Workgroup and other ADRC partners to help facilitate ADRCs adopting this new NACCID process. These resources were also informed by the NACCID pilot that NACC conducted with 32 ADRCs in May of 2024.

ADRCs fill out a simple form to request a NACCID via the ADRC Portal for newly consented participants

The content for the NACCID request form (NACC Participant Enrollment/Transfer Form) is shown here on the PDF version of the form.

ADRCs have four options for collecting the content needed for the NACCID request form (NACC Participant Enrollment/Transfer Form):

• A local REDCap instance
• An alternative local EDC system
• Via PDF forms
• Direct Entry into NACC's REDCap instance

Additionally, ADRCs have three options for submitting the NACCID request form (NACC Participant Enrollment/Transfer Form) to NACC via the ADRC Portal, including: 

• Upload via API
• Batch CSV Upload
• Automated Submission via NACC's REDCap instance

For more help with these collection or submission options, please read the SOPs or visit the UDSv4 resources page.

Technical Resources

NACC Data Platform Access – Center members gain access to the ADRC Portal with permissions set by Center Administrators in their NACC Directory member profile. If you don’t currently have access, please contact your Center Administrator and ask them to add you to the NACC Directory (if you are not yet a member) and mark your permissions. You will subsequently receive an email with instructions for setting up your account.

Technical Documentation & REDCap SOPs - Instructions and best practices, including calculated fields, custom reporting, data access groups, REDCap data quality rules, data dictionaries, customization of user roles, how to use Crosswalks, JSON files, XML, and more.

NACCID Support

ADRCs with questions about NACCID process are encouraged to join NACC Office Hours, which are drop-in Zoom meeting times where ADRC members can ask questions of NACC's Technology, REDCap, and Research Teams. You can also post questions on the ADRC Program Community Forum. If you need an invitation to the Forum, submit a support request.