Protocol - Marital Status of Primary Caregiver

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This protocol includes two self-administered questions from the Silent Cerebral Infarct Multi-Center Clinical Trial (SIT). The first captures the marital status of the primary caregiver and the second captures the relationship of the primary caregiver to the respondent.

Specific Instructions

The PhenX Sickle Cell Disease Research and Scientific Panel (SRSP) notes that this protocol can also be self-administered.




1. Marital status of primary caregiver

[ ] Married

[ ] Widowed

[ ] Separated

[ ] Divorced

[ ] Never married

[ ] Living with partner

[ ] Refused to answer

[ ] Unknown

2. Relationship of primary caregiver to patient

[ ] Mother

[ ] Father

[ ] Niece or nephew

[ ] Aunt or uncle

[ ] First cousin

[ ] Second cousin

[ ] Unknown cousin

[ ] Grandparent

[ ] Great grandparent

[ ] Great great grandparent

[ ] Great aunt or uncle

[ ] Great great aunt or great great uncle

[ ] Foster parent

[ ] Other Specify _______________________________

Personnel and Training Required

The interviewer must be trained to conduct personal interviews with individuals from the general population. The interviewer must be trained and found to be competent (i.e., tested by an expert) at the completion of personal interviews. The interviewer should be trained to prompt respondents further if a "dont know" response is provided.

Equipment Needs

The PhenX Working Group acknowledges these questions can be administered in a computerized or noncomputerized format (i.e., paper-and-pencil instrument). Computer software is necessary to develop computer-assisted instruments. The interviewer will require a laptop computer/handheld computer to administer a computer-assisted questionnaire.

Requirement CategoryRequired
Major equipment No
Specialized training No
Specialized requirements for biospecimen collection No
Average time of greater than 15 minutes in an unaffected individual No
Mode of Administration

Interviewer-administered questionnaire


Infant, Toddler, Child, Adolescent, Adult


Children and adolescents, age less than 22 years

Selection Rationale

These questions from the Silent Cerebral Infarct Multi-Center Clinical Trial (SIT) were vetted against similar protocols and selected as the best methodology to capture marital status of caregivers. These questions are based on similar questions from the National Health and Nutrition Examination Survey (NHANES).



caDSR Form PhenX PX840101 - Marital Status Of Primary Caregiver 6254262 caDSR Form
Derived Variables


Process and Review

Not applicable.

Protocol Name from Source

Silent Cerebral Infarct Multi-Center Clinical Trial (SIT), Demographic/Phenotypic Information


U.S. Department of Health and Human Services. National Institutes of Health. National Institute of Neurological Disorders and Stroke (NINDS). Silent Cerebral Infarct Multi-Center Clinical Trial. Form 02: Demographic / Phenotypic Information. Questions 14 and 15.

General References

King, A.A., Rodeghier, M.J., Panepinto, J.A., Strouse, J.J., Casella, J.F., Quinn, C.T., Dowling, M.M., Sarnaik, S.A., Thompson, A.A., Woods, G.M., Minniti, C.P., Redding-Lallinger, R.C., Kirby-Allen, M., Kirkham, F.J., McKinstry, R., Noetzel, M.J., White, D.A., Kwiatkowski, J.K., Howard, T.H., Kalinyak, K.A., Inusa, B., Rhodes, M.M., Heiny, M.E., Fuh, B., Fixler, J.M., Gordon, M.O., & DeBaun, M.R. (2014). Silent cerebral infarction, income, and grade retention among students with sickle cell anemia. American Journal of Hematology 89(10), E188-E192.

Raphael, J.L., Butler, A.M., Rattler, T.L., Kowalkowski, M.A., Mueller, B.U., & Giordano, T.P. (2013). Parental information, motivation, and adherence behaviors among children with sickle cell disease. Pediatric Blood & Cancer 60(7), 1204-1210.

Protocol ID


Export Variables
Variable Name Variable IDVariable DescriptiondbGaP Mapping
PX840101010000 Marital status of primary caregiver N/A
PX840101020100 Relationship of primary caregiver to patient N/A
PX840101020200 Relationship of primary caregiver to more
patient: Other show less
Sickle Cell Disease Core: Tier 2
Measure Name

Marital Status of Primary Caregiver

Release Date

July 30, 2015


Questionnaire to obtain the marital status of the respondent’s primary caregiver (i.e. family member or another individual who takes primary responsibility for the respondent).


Marital status of the primary caregiver is associated with socioeconomic status, academic achievement, health status and outcomes, insurance coverage, and health care utilization.


Marital status, marital status of primary caregiver, sickle cell disease, SCD, family, Demographics, socioeconomic status, SES, silent cerebral infarct multi-center clinical trial, silent infarct trial, SIT, environment, relationship, education, academic achievement, health status, health outcomes, Health care utilization, quality of life, QOL

Measure Protocols
Protocol ID Protocol Name
840101 Marital Status of Primary Caregiver

There are no publications listed for this protocol.