AoU Research Priorities Use Cases

What are the personal narratives of those receiving genetic test results (when available)?

Longitudinal narrative inquiry capturing diverse voices of study participants receiving genetic test results has the potential to fill gaps in the understanding of individual/family expectations; reactions; actions; and outcomes. Objectives: assess attitudes, literacy, perspectives about receiving genetic test results, implications of results for self/others, family communication pathways, and valued resources. Qualitative analysis of interviews will offer insights of their journey overtime.

The remaining questions allow you to outline in more detail the information needed to address your research question. The series of questions allow up to five entries. If you have more than five entries, please try to prioritize them and enter the remainder in the final field. When done, click Submit at the bottom. Yes

If you did not find your Data Item #1 in the dropdown selection above, please enter it here. Type of genetic test result

If you did not find your method for obtaining Data Item #1 in the dropdown selection above, please enter it here. Interview

Are there specifications that apply to the method by which Data Item #1 will be obtained, e.g., is the measurement taken once a year, every month, or some other variation? If you do not find your specification in the dropdown, you may enter it in the textbox below. Every two years

If Data Item #2 was not in the dropdown, please enter it here. Expectations (attitudes, literacy)

Method #2 Survey

Specification #2 Every two years

If Data Item #3 was not in the dropdown, please enter it here Reactions (i.e, Perspectives about results; Emotions; Implications for self/others)

If Method #3 was not in the dropdown, please enter it here Interview

Specification #3 Every two years

If Data Item #4 was not in the dropdown, please enter it here Actions (i..e., Communication within family; preventive care)

If Method #4 was not in the dropdown, please enter it here Interview

Specification #4 Every two years

Data Item #5 Perceived outcomes - patient

If Method #5 was not in the dropdown, please enter it here Interview

Specification #5 Every two years

If you have more than five data items, you may enter them here.

Valued resources (available/needed)

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