Page 106 - Let them speak Towards a patient reported outcome measure set for

Chapter 5
Figure 1. Steps for developing a meaningful PRO set1: step 1.3 was undertaken in the current study.
PROs, patient reported outcomes; PROM(s), patient reported outcome measure(s); COS(s), core
outcome set(s); (G)ID, (genetic) intellectual disabilities.
1Figure 1: Reproduced/adapted from van Silfhout et al., 2024 (37) under the Creative Commons
license (https://creativecommons.org/licenses/by/4.0/).
2Van Silfhout et al., 2025 (35).
*Targeted number of participants.
Recruitment
Individuals with (G)ID and caregivers were approached through their HCP
at the involved organizations (Amsterdam UMC and ‘s Heeren Loo) and
patient organizations dedicated to a specific (G)ID. A call was also placed
on social media to recruit affected individuals and caregivers. HCPs were
recruited by email at the involved healthcare organizations, and European
patient representatives via the European Reference Network on Intellectual
Disability, TeleHealth, Autism and Congenital Anomalies (ERN-ITHACA),
a patient-centred network that aims to enhance collaboration on rare
neurodevelopmental disorders, both with and without biological diagnosis.
Upon request, individuals with (G)ID and caregivers could authorize their
HCP to share their contact details with the investigator (NvS), allowing
104