National Alzheimer's Coordinating Center
National Alzheimer's Coordinating Center
The NIA Alzheimer’s Disease Research Centers Program
National Alzheimer’s Coordinating Center

E-forms: Guidelines and copyright statements

When developing e-forms for electronic data capture* (EDC), follow the guidelines below. In summary, the guidelines state:

  • Forms must use the exact wording of the NACC paper forms
  • Forms may not have any local items inserted within a form
  • NACC must review and approve your forms before they are used
  • Forms must generate a data file matching the NACC submission format

Guidelines and copyright

These guidelines are intended for Centers interested in developing e-forms for electronic data capture — that is, for primary data collection in the clinic. The aim of the requirements is to ensure that Centers develop e-forms that are a faithful replication of NACC’s paper forms, thus maintaining consistency of the data.

* Please note that NACC involvement is not required for eforms that are used for data entry into a Center's local database.

Developing e-forms for EDC

  • NACC must review and approve the forms before they can be implemented; however, Centers are responsible for the accuracy of the content and the coding, including all skip patterns and allowable ranges given in the data element dictionary.
  • Output files must be compatible with the NACC Data Submission System. Contact NACC at nacc_datagroup@uw.edu if you have any questions about acceptable format.
  • The e-form system must produce raw-data source documents for local records and auditing purposes. These files are stored locally and not sent to NACC unless requested.
  • Each e-form should include a link to the relevant Coding Guidebook.
  • It is permissible to intersperse Center-specific material between forms (but not among questions within a form). A Center’s additional material should be presented as a separate ADRC-specific form that precedes or follows the UDS form to which it relates. For example, additional questions about alcoholism might be administered via an ADRC-specific form that follows UDS Form A5 or D1.
  • No Center-specific material can be inserted within the Neuropsychological Battery. The tests must be administered in their original order.
  • The relevant copyright statement must appear on all e-forms.

Updating e-forms

  • When a new version of the NACC forms is implemented (e.g., UDS Version 3 replacing UDS Version 2), NACC must once again review and approve the revised e-forms.
  • Re-certification by NACC is not required for small changes and updates (e.g., spelling changes or changes in wording for clarification); however, it is the Center’s responsibility to incorporate form revisions. Centers are notified of these revisions by emails distributed through the ADRC listservs. In addition, a list of form changes can be found on the second page of each form packet.

UDS statement
Adapted with permission. Copyright© 2006, 2008, 2015, 2017 University of Washington. Created and published by the ADRC Clinical Task Force (John C. Morris, MD, Chair) and the National Alzheimer’s Coordinating Center (U24 AG072122 — Walter A. Kukull, PhD, Director). All rights reserved.
FTLD statement
Adapted with permission. Copyright© 2013, 2015 University of Washington. Created and published by the ADRC Clinical Task Force (John C. Morris, MD, Chair) and the National Alzheimer’s Coordinating Center (U24 AG072122 — Walter A. Kukull, PhD, Director). All rights reserved.
LBD statement
Adapted with permission. Copyright© 2017 University of Washington. Created and published by the LBD work group of the ADRC Program (James Galvin, MD, PhD, Chair) and the National Alzheimer’s Coordinating Center (U24 AG072122 — Walter A. Kukull, PhD, Director). All rights reserved.
NP statement
Adapted with permission. Copyright© 2006, 2008, 2014 University of Washington. Created and published by the Neuropathology Steering Committee of the ADRC Program and the National Alzheimer’s Coordinating Center (U24 AG072122 — Walter A. Kukull, PhD, Director). All rights reserved.