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Chapter 7
Figure 1. Steps for developing a GenID core PRO(M) set1: step 4.1 was undertaken in this study.
PROs, patient reported outcomes; PROM(s), patient reported outcome measure(s); COS(s), core
outcome set(s); GenID, (genetic) intellectual disabilities.
1Figure 1: Reproduced/adapted from van Silfhout et al., 2024 (29) under the Creative Commons
license (https://creativecommons.org/licenses/by/4.0/).
2Van Silfhout et al., 2025 (26).
3Van Silfhout et al., 2025 (27).
4Van Silfhout et al., 2026 (28).
Methods
This study was reviewed by the Medical Ethics Review Committee of the
Amsterdam UMC, which determined that the Medical Research Involving
Human Subjects Act (WMO) did not apply. The study was part of a larger
project also involving caregivers of young children with GenID (1 – 4 years)
and children with GenID (aged 8 – 17 years). These groups were not
included in the current study because the sample sizes for these groups
were too small.
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