Page 139 - Let them speak Towards a patient reported outcome measure set for

Establishing the core PRO set
Methods
We performed an expert group meeting followed by a two-round
international Delphi study and two consensus meetings to reach consensus
on the most important PROs for individuals with GID (see Figure 1). This
study followed the standards for developing and reporting a COS (Kirkham
et al. 2017; Kirkham et al. 2016), and was registered at the Core Outcome
Measures in Effectiveness Trails (COMET) Initiative website (https://www.
comet-initiative.org/Studies/Details/3148). A formal review and waiver
was obtained for this study by the Medical Ethics Committee of the
Amsterdam UMC (W22_345 # 22.413). Participants in the Delphi study
and the consensus meetings provided written (electronic) consent before
participation.
6
Figure 1. Steps for developing the generic core PRO set1: step 2.1, 3.1, and 3.2 were undertaken in
this study.
PROs, patient reported outcomes; PROM(s), patient reported outcome measure(s); COS(s), core
outcome set(s); GID, genetic intellectual disabilities.
1Figure 1: Reproduced/adapted from van Silfhout et al. (2024) under the Creative Commons license
(https://creativecommons.org/licenses/by/4.0/).
2Müller, van Silfhout, et al. (2024) and van Silfhout, van Muilekom, van Karnebeek, Daams, et al. (2025).
3Van Silfhout, van Muilekom, van Karnebeek, Haverman, and van Eeghen, (2025).
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