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Fig. 1 | Trials

Fig. 1

From: Evaluating parents’ decisions about next-generation sequencing for their child in the NC NEXUS (North Carolina Newborn Exome Sequencing for Universal Screening) study: a randomized controlled trial protocol

Fig. 1

Study design workflow. Three phases of the NC NEXUS study workflow. During phase 1, interested parents agree to learn more about the study and are asked to complete the time 1 pre-decision questionnaire and the time 2 post-decision assessment. Parents use the decision aid to learn about the study and NGS-NBS for their child and complete informed consent procedures at a clinic study visit if they decide to participate. During phase 2, samples are obtained after consent is given at study visit 1. Randomization status and NGS-NBS results are returned to parents at their second study visit. During phase 3, parents in the decision arm decide via a second part of the decision aid whether to consent to and receive any additional information by phone (for carrier status results) or at a third study visit. Parents randomized to the decision arm also complete a time 2A post-additional information decision assessment. Both the decision arm and the control arm complete a short-term follow-up assessment and a long-term follow-up assessment. NBS newborn screening, NGS next-generation sequencing

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Trials

ISSN: 1745-6215