SURVEY: Race, Ethnicity and Ancestry Data in the IHCC
This survey will provide us valuable information on the heterogeneity of measurements for
race, ethnicity, ancestry, and other descent-related identities across the globe and help us to
develop standardized measures that can be utilized by researchers in the IHCC and globally.
This survey was developed by the IHCC and research collaborators at Duke University and George Washington University.
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Email *
1. Cohort name *
2. Regions of your cohort: *
3. Do you collect race, ethnicity, ancestry, or other similar population descriptor data? *
Yes
No
Race
Ethnicity
Ancestry
Other
3.1. If you replied “Yes” to any items on Question 3, what definitions/ontology terms are used for each item?    Write “Not applicable” if you do not collect any population descriptor *
4. How do you collect race, ethnicity, ancestry, or other population descriptor data?    Check “Not applicable” if you do not collect any population descriptors. *
Yes
No
Not applicable
Online
In-person
Other
4.1. If you replied “Yes” to “Other” on Question 4, please explain here.
5. Please list the categories you use to collect race, ethnicity, ancestry, or other population descriptor data. Please copy and paste the question(s) and categories from the survey you have implemented in your cohort.           Write “Not applicable” if no population descriptors are collected. *
6. Do you determine race, ethnicity, ancestry, or other population descriptors using any of the following? *
Yes
No
Participant self-report
Patient medical record data
Researcher observation
Genetic assessment
Other
6.1. If you replied “Yes” to “Other” on Question 6, please explain here
7. Do you assign participants to an ancestry group based on genetic assessment? *
Required
8. Is there anything else you would like to tell us regarding your experience defining or describing race,  ethnicity, ancestry, or other population descriptors in research?
9. May we contact you about additional race, ethnicity, or ancestry studies conducted by the IHCC? *
10. Are we able to access the race, ethnicity, ancestry data for your cohort?
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