Family Health History: Follow Up Survey Details and Resources

Survey Design

The All of Us Research Program Family Health History survey asks about the medical history of participants’ immediate biological family members. The survey includes 116 items (1 main item and 115 related follow-ups) developed specifically for use within the All of Us Research Program.

 

Scoring Considerations for the Family Health History Survey

The Family Health History survey includes categorical items specific to family health history diagnoses and can not be scored. 

 

Sample Eligibility

The survey was considered a “follow-up” survey and was available to all All of Us participants after completion of the Basics, Overall Health, and Lifestyle surveys. Note: This survey is no longer fielded and has been replaced by a combined Personal and Family Health History survey. Response data collected through the Family Health History survey is available in both the Registered and Controlled Tier CDRs; the combined Personal and Family Health History survey responses will also be released via a future CDR. Participants who completed the individual Personal Medical Health History and Family Health History surveys do not complete the combined survey.

 

For more information about survey samples and releases, please see Introduction to All of Us Survey Collection and Data Transformation Methods.

 

Data Model & Privacy Protection Considerations

All survey codebook variables (e.g., source codes) are deposited into the OMOP Common Data Model’s observation table and stored as concepts in an AoU specific “PPI” vocabulary. This vocabulary is both browsable and downloadable via Athena, the online OMOP repository - for a listing of concepts specific to the Personal Medical History survey, please see this Athena entry. 

 

Select items from the Family Health History survey have been either suppressed or generalized within the Registered and Controlled Tiers. Please see below for these specifics, which are also captured in the All of Us survey codebook and How All of Us Protects Participant Privacy

 

Registered and Controlled Tier Privacy Considerations for the Family Health History Survey

Data Element

Registered Tier

Controlled Tier

Free text fields (Concept IDs: 43528520, 43528518, 43528521, 43528517, 43528522, 43528519, 43529642, 43529640, 43529643, 43529639, 43529644, 43529641)

Suppressed

Suppressed

Other Cancer Who in your family has had other cancer(s)? Select all that apply. (Concept ID: 836835)

Generalized

As Collected

Other Health Condition Who in your family has had other condition(s)? Select all that apply. (Concept ID: 836856)

Generalized

As Collected

 

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