Table 4.
Sex and Gender Measure Variable Names and Collection Methods in Alzheimer’s Disease Research Centers (ADRCs) and Investigator-Initiated (II) Cohort Studies Protocols
| Variablea name | Sexb | Gender | IDNOc | HRTd | Genotype | Unknowne | No variable | Total |
|---|---|---|---|---|---|---|---|---|
| Source type | ||||||||
| ADRCs | 25 | 4 | 0 | 0 | 0 | 4 | 0 | 33 |
| II cohort studies | 11 | 5 | 1 | 1 | 1 | 4 | 2 | 25i |
| Total | 36 | 9 | 1 | 1 | 1 | 8 | 2 | |
| Collection method | ||||||||
| Biologic specimen | 0 | 0 | 0 | 0 | 1 | 0 | 0 | 1 |
| Direct observationf | 5 | 1 | 0 | 0 | 0 | 1 | 1 | 8 |
| Self-reportg | 32 | 8 | 1 | 1 | 0 | 1 | 0 | 43 |
| Other sourceh | 5 | 0 | 0 | 0 | 0 | 0 | 1 | 6 |
| Unknown | 0 | 0 | 0 | 0 | 0 | 7 | 0 | 7 |
| Total | 42j | 9 | 1 | 1 | 1 | 9k | 2 |
Notes:
aThe name of variable as entered into the study’s data set or code book.
bIncludes variables labeled “sex” or derivative term (i.e., subject’s sex, sexrsp).
c“Study participant identification (ID) number” intended to indicate biological sex, whereby ID numbers 1 to 4,999 were assigned to men and those 5,000 to 9,999 were assigned to women.
dA single self-report item. Female participants are asked the following question: “Did you ever take any type of estrogen hormonal medication, for example, Premarin, Ogen, or Estrace, or progesterone hormonal medication, for example, Provera?” (Hormone Replacement Therapy Variable Details | RADC, n.d.).
eUnknowns = No responses (ADRC, n = 3; II, n = 0), “self-report” (ADRC, n = 1; II, n = 1). The responses from ADRCs account for four of five instances where multiple individuals from the same institution responded to the survey.
fBased on interviewer observation (n = 1), self-report and physical examination/observation (n = 4), or no clarification was provided (n = 3).
gMay be answered by participant/subject, informant, or study personnel, as described in study procedures.
hObtained from an existing record such as medical record, insurance record, or other secondary source.
iIncludes one instance where two respondents answered on behalf of a cohort study.
jSix sex variable responses with multiple measurements (i.e., self-report and direct observation).
kOne response (“self-report”) listed two methods of measurement (direct observation and self-report).