UDS 3.0 REDCap Standards
The UDS 3.0 REDCap forms were tested on a variety of REDCap versions including an older ‘more stable’ version.
Section headers may not be visible in Excel if you are scrolling down a column. When a section header begins with a hard return, the cell appears blank until your cursor lands on it.
Our UDS 3.0 REDCap forms will look more polished if we standardize common items across forms and use some naming conventions. Below is an initial list of items that can be standardized.
The NACC forms we received on Nov 13, 2014 are not always consistent. Most forms begin with NOTE:, however, form A3 begins with Instructions. Most forms give NACC’s contact info, the form name and form version in the footer. Some forms only include form names in the footer on even pages. I think we should include all 3 items on all forms. We won’t really be concerned with even or odd pages.
It has been noted that the Data Element Dictionary does not always contain all of the text that is included on the paper forms.
NACC has given approval for clarifying text to be added to fields where labels are minimal such as ‘specify’ or ‘If yes, specify’. (see Feb 3, 2015 email from Janene Hubbard) For example, the label for form D1 othmutx may be expanded to read something like ‘Please specify hereditary mutation other than AD or FTLD mutation.’
Various form features are listed below along with a sample of what the REDCap data dictionary would look like. NACC asked KUMC to add a copyright to each of the forms that NACC created. Validated instruments get the appropriate reference and NACC copyright.
Record_ID - Unique REDCap identifier
Label as ADC Subject ID
header info
A Header form was created so that we would all be using the same standard for these fields. Centers can choose to use these when and where they would like .
Form Header/Name
Field Type = Begin a New Section (with optional text)
Text is centered withblue text for the type of packet. The color helps keep you oriented as to which visit you are looking at. For example, the text below would appear in the Section Header column for the form instructions.
center<font color=blue>Initial Visit Packet</font> NACC UNIFORM DATA SET (UDS)<hr<center> Form A1: Subject Demographics</center<hr>
Field Names
NACC prescribed field names will be used as-is on the Initial Visit forms (eg. livsit). Telephone Follow-up forms are typically identical to Follow-Up forms. Please create 2 copies of the form, one for each packet. Field names on the Follow-Up forms will begin with a prefix of fu_. The NACC field name follows. (eg.fu_livsit). This means you will have to update the field names used in branching logic. Field names on the Telephone Follow-Up forms will begin with a prefix of Tele_. The NACC field name follows. (eg. tele_livsit). Using a prefix on field names allows the event grid for longitudinal REDCap projects to best reflect the patient flow in the clinic.
Form Note (section header will typically contain the form header/name, see above)
Variable/Field Name / Form name / Section Header / Field Type / Field Labelnote_a1 / a1 / <center> <font / descriptive / NOTE: This form is to be completed etc.
note_a1_2 / a1 / A second set of notes
Form Instructions (section header column is blank)
Some forms have multiple sets of instructions. A3 for example has a Section for Biological Parents and related instructions (eg. Provide information on all …) and a section for Full Siblings with it’s own instructions.
Variable/Field Name / Form name / Field Type / Field Labelinstructions_a3 / a3 / descriptive / Provide information on all …
instructions_a3_2 / a3 / descriptive / Year of birth for full …
Matrix Group Names
Matrix Group Name, the last column in a REDCap data dictionary, is populated to create a matrix. We decided to use a prefix of mtx_, fu_mtx_ or tele_mtx_ to name the matrix for initial visit, follow-up and telephone follow-up forms. The form name follows the prefix. Finally if the matrix is used for only a portion of the form, the first question number is listed, then an underscore, then the last question number included in the matrix.
Variable / Field Name / Form Name / Field Type / Field Label / … / Matrix Group Namebills / b7 / radio / 1.Writing checks … / mtx_b7
taxes / b7 / radio / 2.Assembling tax … / mtx_b7
resttrl / fu_b8 / radio / 2a1. Resting tremor – arm / fu_mtx_b8_2a_2cL
Clinicians at KUMC preferred that lengthy matrices either be broken up into several shorter matrices or changed to radio buttons. The column headings for long matrices scroll off the screen and it is no longer obvious what each button means. Specifically KUMC changed the following to radio buttons: B9 4a-4g, 9a-9j, 14a-14d, D1 6a-6j, 7a-7f
Footer (section header column is blank)
Variable/Field Name / Form name / Field Type / Field Labelfooter_a1 / a1 / descriptive / National Alzheimer's Coordinating Center | fax: (206) 616-5927 | | <hr> UDS Initial Visit Form A1: Subject Demographics (UDS Version 3.0, March 2015)
Copyrights (section header column is blank)
NACC asked that this copyright be inserted at the end of each NACC-created form. Validated instruments such as B4, B5, B6 and B7 will get a reference or different copyright in addition to the NACC copyright. Getting the copyright symbol to display properly can be tricky. We used
© as the code for the symbol. Copying and pasting text that already has a symbol in it does not always produce expected results.
Variable/Field Name / Form name / Field Type / Field Labelcopyright_a1 / a1 / descriptive / <font color=blue> Adapted with permission. Copyright© 2006, 2008, 2015 University of Washington. Created and published by the ADC Clinical Task Force (John C. Morris, MD, Chair) and the National Alzheimer's Coordinating Center (Walter A. Kukull, PhD, Director). All rights reserved.</font color=blue>
References (section header column is blank) Some of these are actually copyrights.
Variable/Field Name / Form name / Field Type / Field Labelreference_b7 / b7 / descriptive / [1] Pfeffer RI, Kurosaki TT, Harrah CH, et al. Measurement of functional activities of older adults in the community. J Gerontol 37:323-9, 1982. Copyright © 1982. The Gerontological Society of America. Reproduced by permission of the publisher.