The demographics table contains basic person-descriptives for the people found in VDW tables. It should also serve as a lookup dataset for MRNs—every MRN appearing in any other VDW file should appear in Demographics (even if nothing substantive is known about the person).
|Variable name||Type(Length)||Preferred Format||Description||Valid Values||Comments|
An arbitrary identifier unique to an individual within a site.
|Any, so long as they uniquely identify individual people.||
Used to link people across files within a site. May or may not contain the official local indigenous person identifier (e.g., "medical record number").
Regardless of whether it contains the official local identifier, this variable should never leave the site. Projects needing to move individual-level data should create a study-specific person identifier and substitute it for MRN on any data that is to move (See, e.g., the %DeIDDset() standard macro.)
|birth_date||numeric(4)||mmddyy10||Date of Birth||SAS Date|
|gender||char(1)||n/a||Gender or sex of the person.||
||This variable is whatever the health plan collects as GENDER (role) or SEX (biology), in that order of preference. Information on transgendered and transsexual individuals should be coded as “Other”. Sites able to provide reliable data on transgendered and transsexual persons should document the availability of this information on their site dataset implementation page on the portal.|
|char(2)||n/a||Race(s) of the person.||
||See Note 1 below.|
|hispanic||char(1)||n/a||Hispanic origin (ethnicity)||
||Nulls are no longer allowed.|
|primary_language||char(3)||n/a||Primary language spoken at last contact||
As defined in the ISO-639-2 specification, or 'unk', for unknown.
|needs_interpreter||char(1)||n/a||Needs interpreter to communicate w/an English-only speaker?||
Our goal is to have the most complete, reliable, and detailed race and ethnicity information in the demographics file. SDMs should gather race information from all sources permitted at your site—for example, tumor registry data; state birth & death data; and regular large-scale social surveys. If there is more than one source of race information for a set of individuals, SDMs should give preference to self-reported sources.
Where multiple sources (or multiple measures from a single source) conflict as to the race of a given person, and the SDM does not have a reason to prefer one source to another (e.g., no one source is known to be most trustworthy, etc.) code all races indicated by any source.
For data sources that treat Hispanic ethnicity as a value of race (so e.g., you know the person is Hispanic, but you don’t know their race) code the person’s race as "Unknown".
Race is now coded in accordance with the NIH Policy And Guidelines On The Inclusion Of Women And Minorities As Subjects In Clinical Research.
|Example Race Coding||Race1||Race2||Race3||Race4||Race5|
|White and Pacific-Islander||HP||WH||UN||UN||UN|
|No Race Known||UN||UN||UN||UN||UN|
|African-American and Native-American||IN||BA||UN||UN||UN|
|Multi-racial, particular races not reported.||MU||UN||UN||UN||UN|
The below format can be used to translate the values of the prior race coding scheme into those of the new scheme.
value $Race '01' = 'WH' '02' = 'BA' '03' = 'IN' '04', '05', '06', '08', '09', '10', '11', '12', '13', '14', '96' = 'AS' '07', '20', '21', '22', '25', '26', '27', '28', '30', '31', '32', '97' = 'HP' Other = 'UN' ;
We plan to revisit coding of sex (biology), gender (role), race, and ethnicity as our health plans increase their sophistication of collecting this information from their members.
Please contact the VDW Enrollment and Demographics working group for questions and suggestions. Working group contact information can be found on the VDW Operations section of the CRN Portal.Back