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 NACC's 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's 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.

Copyright statements required on custom e-forms

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.

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NACC is funded by the National Institute on Aging (U24 AG072122) 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