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. Author manuscript; available in PMC: 2024 Oct 1.
Published in final edited form as: J Genet Couns. 2023 Apr 2;32(5):993–1008. doi: 10.1002/jgc4.1707

Figure 1B: Recruitment and retention of Participants from the UDN.

Figure 1B:

Illustration of sample identification, recruitment and study completion for Participant group. Survey completion rate was higher than in the Decliner group (24/44 probands, 54.5%). Of the 24 probands in the Participant group, seven had duplicate survey responses, due to both parents responding, with a total of 31 responders (3 adult probands who responded for themselves and 28 guardians responding for the other 21 probands). Thus, non-independence of the data was accounted for in our analyses. Interviews were not performed in the Participant group, to decrease study burden, since they had already participated in the research NGS.