Preferences in returning Individual Research Results- Research professionals

Thank you for agreeing to take this survey. This survey should take about 5-7 minutes to complete.

It consists of nine questions, including multiple-choice questions, and ranking questions. Your participation is voluntary, and you can stop the survey at any time.

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* 1. From your perspective, as a research professional, please indicate what you think participants may find most useful when thinking about the types of results they may get back as a part of their participation in a research study. (Rank the following items from Top=most important to Bottom=least important.)

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* 2. Imagine that as part of a participant’s involvement in research, they have the option to receive personalized health information discovered during the course of the study. From your perspective as a research professional, imagine it’s discovered that a study participant has a high level of lead in their system, likely associated with their home environment.

Assuming that their individual research results are relatively straightforward and easy to understand, who do you believe is the best person to explain their results to them? (Note: a professional may use printed materials, videos, or websites to convey the information.)

A researcher associated with the study

A medical professional associated with or identified by the study

A professional associated with a medical setting or hospital of the participant's choice

I think it is optimal for participants to educate themselves using study-provided printed materials, videos, and websites

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* 3. Imagine that as part of a participant’s involvement in research, they have the option to receive personalized health information discovered during the course of the study. From your perspective as a research professional, imagine it’s discovered that a study participant may be at increased risk for early onset Alzheimer’s disease.

Assuming that their individual research results may be complicated and difficult to understand, who do you believe is the best person to explain their results to them? (Note: a professional may use printed materials, videos, or websites to convey the information.)

A researcher associated with the study

A medical professional associated with or identified by the study

A professional associated with a medical setting or hospital of the participant's choice

I think it is optimal for participants to educate themselves using study-provided printed materials, videos, and websites

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* 4. Which of the following best describes your role as a research professional?

Lead researcher

Institutional review board (IRB) community member

Clinical investigator

Clinical research coordinator

Research analyst

Data scientist

Research assistant

Other (please specify)

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* 5. Imagine again, that as part of a participant’s involvement in research, they have the option to receive personalized health information discovered during the course of the study. From your perspective as a research professional, imagine it’s discovered that a study participant has a high level of lead in their system, likely associated with their home environment.

Assuming that their individual research results are relatively straightforward and easy to understand, what type of materials do you think are best for the participant to receive to help them understand their results?

An informational graphic

An educational video

An educational audio recording

Educational written materials

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* 6. Imagine again, that as part of a participant’s involvement in research, they have the option to receive personalized health information discovered during the course of the study. From your perspective as a research professional, imagine it’s discovered that a study participant may be at increased risk for early onset Alzheimer’s disease.

Assuming that their individual research results may be complicated and difficult to understand, what type of materials do you think are best for the participant to receive to help them understand their results?

An informational graphic

An educational video

An educational audio recording

Educational written materials

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* 7. In the event that a participant’s individual research results are urgent, they will be notified immediately of their results. However, for research results that are not urgent, from your perspective as a research professional, how often do you think participants should receive information?

At regular intervals throughout the study period

Upon completion of the study

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* 8. From your perspective, as a research professional, in a scenario where the participants’ returned research results have negative implications, after they have been educated about what their results mean, what additional supports do you think they may find most helpful to start navigating next steps?

Connection to an insurance plan navigator

Connection to mental health and wellness services

Connection to a healthcare-focused social worker

Receipt of written information about their results that they can share with anyone they choose, including their doctor

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* 9. From your perspective, as a research professional, review the following list of activities that must be thought through when planning for the return of participants’ individual research results. Please indicate what you think is most important to carefully consider by ranking which activities should be prioritized. (Assign a number from Top=most important to Bottom=least important.)

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* 10. What is your age? (Years)

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* 11. Are you:

Female

Male

Transgender, non-binary, or another gender

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* 12. What is your race?

White

Black or African American

Asian or Asian American

Pacific Islander

Asian or Asian American

Another race

Prefer not to answer

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* 13. Are you of Hispanic, Latino, or Spanish origin?

Yes

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* 14. Which of the following best describes the area you live in?

Urban – Densely populated, city or large town

Suburban – Mainly residential, bordering a city or large town

Rural – Sparsely populated, small town or village

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* 15. What is your zip code?

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* 16. If you are interested in participating in an additional research phase on this subject, please provide us your email address. Your time may be compensated for participation in the next phase.