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Updated race and ethnicity labeling coming to OPTN data reports

Beginning in late January 2022, labeling of race and ethnicity information for organ donors, transplant recipients, and candidates for transplant will change on a number of data reports available on the Organ Procurement and Transplantation Network (OPTN) website. These changes will make summary reporting of race and ethnicity data clearer, more consistent and easier for users to interpret. These changes will not impact data collection.

Why are these changes happening?

These changes will make OPTN reporting of race and ethnicity more consistent with common health research reporting practices. Race and ethnicity are separate social constructs, and while they often need to be combined into a single variable for data analysis, the changes will help avoid misclassification of some groups.

What will be different?

When these changes go into effect, OPTN reports and data products that currently refer to “Ethnicity” will refer to “Race/Ethnicity.”

The changes mean that new category descriptions will appear in data reports accessible on the OPTN website. These new category descriptions are:

  • White, Non-Hispanic
  • Black, Non-Hispanic
  • Hispanic/Latino*
  • Asian, Non-Hispanic      
  • Amer Ind/Alaska Native, Non-Hispanic
  • Native Hawaiian/Other Pacific Islander, Non-Hispanic
  • Multiracial, Non-Hispanic

*All donors, candidates and recipients with reported Hispanic ethnicity will be included in the Hispanic/Latino category in OPTN reports and data products

Data collection not impacted by changes

This change will be visible on OPTN reports accessible on the OPTN website, but these changes do not impact how donor, candidate or recipient data are collected by the OPTN.

There are no changes to how data about race or ethnicity are captured in UNet℠ or in any individual collection forms. The collection of the “Ethnicity/Race” field on OPTN forms and the appearance of these data in the UNet application system will not change.

What data does the OPTN collect?

The OPTN collects and manages all data that pertain to the patient waiting list, organ donation and matching, and transplantation occurring in the U.S. Learn more about OPTN data.

Questions?

If you have questions relating to the changes or about any OPTN data tools or products, please contact dataproducts@unos.org for additional information.