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Clinical trials of disease modifying therapies require valid and responsive outcome measures that are relevant to individuals with RNDDs. Identifying and evaluating current psychometric properties for communication measures is a critical step towards the selection and use of appropriate instruments.<\/jats:p><\/jats:sec><jats:sec><jats:title>Aims<\/jats:title><jats:p>This systematic review offers (1) a description of parent\u2010reported communication measures and (2) evidence for their psychometric properties, in RNDDs.<\/jats:p><\/jats:sec><jats:sec><jats:title>Methods<\/jats:title><jats:p>The systematic review protocol was registered in the International Prospective Register of Systematic Reviews (PROSPERO; CRD42022334649). MEDLINE (Ovid), Embase, PsychINFO, Web of Science, CINAHL Plus, Cochrane Library, ClinicalTrials.gov, the Australian New Zealand Clinical Trials Registry were searched from inception to August 2023. Methodological assessment of quality was completed using the COnsensus\u2010based Standards for the selection of health status Measurement INstruments (COSMIN) checklist. Parent\u2010reported measures used in observational studies and clinical trials were identified. Data on utility, reliability and validity for RNDDs were extracted.<\/jats:p><\/jats:sec><jats:sec><jats:title>Main Contribution<\/jats:title><jats:p>Sixteen parent\u2010reported communication measures were used in RNDD research, the Vineland Adaptive Behavior Scales being most commonly used. Validation data in RNDDs were identified for six of these measures. Limitations related to sample size or the scope of psychometric testing.<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusions<\/jats:title><jats:p>Many communication measures have been used for RNDDs but there are few data validating their use. Valid and reliable methods of measuring communication in persons with RNDDs is a priority for future high\u2010quality clinical trials.<\/jats:p><\/jats:sec><jats:sec><jats:title>WHAT THIS PAPER ADDS<\/jats:title><jats:sec><jats:title>What is already known on the subject<\/jats:title><jats:p><jats:list list-type=\"bullet\">\n<jats:list-item><jats:p>Communication is a critical domain for families with a child with a rare neurodevelopmental disorder (RNDD). Validated outcome measures are essential for accurate evaluation and interpretation of responses to treatments in clinical trials.<\/jats:p><\/jats:list-item><\/jats:list><\/jats:p><\/jats:sec><jats:sec><jats:title>What this paper adds to existing knowledge<\/jats:title><jats:p><jats:list list-type=\"bullet\">\n<jats:list-item><jats:p>We identified 16 parent\u2010reported communication measures that have been used with RNDDs, but only six measures had validation data for at least one RNDD. High quality evidence is accumulating, with all validation studies in this review published between 2020 to 2023. Modifications of existing measures may be required to assess communication for RNDDs.<\/jats:p><\/jats:list-item><\/jats:list><\/jats:p><\/jats:sec><jats:sec><jats:title>What are the clinical implications of this work?<\/jats:title><jats:p><jats:list list-type=\"bullet\">\n<jats:list-item><jats:p>This systematic review catalogues the available psychometric data for communication measures and indicates an ongoing need for new validation studies to ensure they are fit\u2010for\u2010purpose for upcoming clinical trials in RNDDs. This review will inform the selection of communication measures for clinical trials and research studies.<\/jats:p><\/jats:list-item>\n<\/jats:list><\/jats:p><\/jats:sec><\/jats:sec>","DOI":"10.1111\/1460-6984.13100","type":"journal-article","created":{"date-parts":[[2024,8,14]],"date-time":"2024-08-14T17:09:47Z","timestamp":1723655387000},"page":"2528-2553","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":6,"title":["Parent\u2010reported outcome measures evaluating communication in individuals with rare neurodevelopmental disorders: A systematic review"],"prefix":"10.1111","volume":"59","author":[{"ORCID":"https:\/\/orcid.org\/0000-0003-4638-6589","authenticated-orcid":false,"given":"Jacinta M.","family":"Saldaris","sequence":"first","affiliation":[{"name":"Telethon Kids Institute  Nedlands Western Australia Australia"},{"name":"The University of Western Australia Centre for Child Health Research  Crawley Western Australia 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