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Chapter 5116motor function as outcome without another COA about mental or social functioning, general health perceptions or HR-QoL were excluded to narrow the scope of the review. Eligible assessments included descriptions related to neurological functioning, mental and social functioning, general health perceptions or HR-QoL.Search strategy, study selectionMEDLINE (Ovid), PsycINFO and Cochrane CENTRAL were searched from 2012 to 2022, with assistance of a clinical research librarian (JGD). A list of genetic disorders associated with ID was composed using the human phenotype ontology (HPO) database on https://hpo.jax.org/app/. All terms describing a genetic disease assigned to the subontology ID were included;collectively the HPO-ID list of GNDs. Furthermore, a search strategy for ID without known genetic etiology was used in combination with terms for trials (https://osf.io/2zmxv/). A time limit of the last 10 years was applied to identify the most recent clinical trials. Additional papers were identified by reference list checking. In order to enhance precision of search results, VOSviewer was used to visually identify potentially irrelevant terms eligible for exclusion with corresponding network visualization, contributing to disambiguation (e.g., excluding irrelevant records on GNDs as in ‘Duchenne muscular dystrophy’ and ‘retinitis pigmentosa’) (Supplementary Figure 2). When for a specific trial both a research article and trial protocol from a register were available, only the research article was included. The application Rayyan was used for screening.35 Titles and abstracts were independently screened for eligibility by six reviewers (AM, BdH, EB, LB, MB, AvE) who all screened one-sixth of the selected items, with a subsample of 10% double-screening for interrater reliability. Discrepancies were discussed until consensus was reached. Full texts were screened for eligibility, and data were independently reviewed by seven reviewers (AM, BdH, EB, LB, MB, NvS, AvE) with a sample of 10% double-reviewing for interrater reliability. Potential discrepancies were solved through discussion. Data extractionThe following data were extracted: title, year of publication, first author, journal, countries of study, type of study, number of participants, GND/Annelieke Muller sHL.indd 116 14-11-2023 09:07