Cope Heidi, Lincoln-Boyea Beth, Gwaltney Angela You, Biesecker Barbara B, Moultrie Rebecca, Alexander Amir A, King Nancy M P, Check Jennifer, Corbo Allyson, Tzeng Janice, Porter Katherine Ackerman, Peay Holly L
Genomics, Bioinformatics, and Translational Research Center, RTI International, Research Triangle Park, North Carolina, USA.
Department of Biostatistics and Data Science, Wake Forest University School of Medicine, Winston-Salem, North Carolina, USA.
Clin Genet. 2023 Jun;103(6):672-680. doi: 10.1111/cge.14325. Epub 2023 Mar 23.
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.
“早期检查”是北卡罗来纳州一项自愿参与的大规模新生儿筛查扩展研究，该研究使用一个基于网络的自主门户来反馈个体正常研究结果（IRR）。对于参与者使用基于网络的门户接收IRR的看法，人们知之甚少。本研究使用三种方法探索了“早期检查”门户内用户的态度和行为：（1）向参与婴儿的同意家长（通常是母亲）提供的反馈调查，（2）对一部分家长进行的半结构化访谈，以及（3）谷歌分析。在大约3年的时间里，17936名新生儿收到了正常的IRR，门户访问量达27812次。大多数接受调查的家长报告称查看了他们宝宝的结果（86%，1410/1639）。家长们大多认为该门户易于使用以获取结果，并且有助于理解结果。然而，10%的家长表示很难找到足够信息来理解他们宝宝的结果。在“早期检查”中，通过门户提供正常的IRR使大规模研究变得可行，并且得到了大多数用户的高度评价。正常IRR的反馈可能特别适合基于网络的门户，因为参与者不查看结果的后果较小，而且正常结果的解读相对简单直接。
