Early Check is a voluntary, large-scale expanded newborn screening study in North Carolina that uses a self-directed web-based portal for return of normal individual research results (IRR). Little is known about participant perspectives in using web-based portals to receive IRR. This study explored user attitudes and behaviors within the Early Check portal using three methods: (1) a feedback survey available to the consenting parent of participating infants (typically mothers), (2) semi-structured interviews conducted with a subset of parents, and (3) Google Analytics. During an approximate 3-year period, 17 936 newborns received normal IRR and there were 27 812 visits to the portal. Most surveyed parents reported viewing their baby's results (86%, 1410/1639). Parents largely found the portal easy to use to get results, and helpful in understanding the results. However, 10% of parents said it was difficult to find enough information to understand their baby's results. In Early Check, providing normal IRR via the portal made a large-scale study practical, and was highly rated by most users. Return of normal IRR may be particularly amenable to web-based portals, as the consequences to participants from not viewing results are modest, and the interpretation of a normal result is relatively straightforward.
Use of a web-based portal to return normal individual research results in Early Check
Exploring user behaviors and attitudes
Cope, H., Lincoln-Boyea, B., Gwaltney, A. Y., Biesecker, B. B., Moultrie, R., Alexander, A. A., King, N. M. P., Check, J., Corbo, A., Tzeng, J., Porter, K. A., & Peay, H. L. (2023). Use of a web-based portal to return normal individual research results in Early Check: Exploring user behaviors and attitudes. Clinical Genetics, 103(6), 672-680. https://doi.org/10.1111/cge.14325
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