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To bridge this gap for chromosome 6 disorders, the Chromosome 6 Project collects detailed genotype and phenotype data, aiming to provide aberration\u2010specific phenotype information to parents via an interactive website. With input from 32 parents and 21 professionals, including medical doctors, cytogeneticists, health psychologists, and communication specialists, we used a three\u2010round Delphi method to determine the type and amount of health\u2010related information to be presented on this website. A pre\u2010Delphi questionnaire identified key factors for reporting clinical information online, forming the basis for 13 Delphi statements. Consensus was reached for 12 statements. Participants agreed that clinically relevant features should always be reported given their health impact, while parents also emphasized the importance of issues affecting the child's or family's well\u2010being. Feature prevalence was supported as a guide for the order of reported features. To limit information overload, participants agreed on a reporting threshold for certain features. Finally, parents will be able to tailor the amount and type of information they view, with all details remaining accessible for future reference. While focused on chromosome 6 aberrations, these findings can inform the online information needs of families and professionals dealing with other rare genetic disorders.<\/jats:p>","DOI":"10.1002\/ajmg.a.64038","type":"journal-article","created":{"date-parts":[[2025,3,13]],"date-time":"2025-03-13T11:01:49Z","timestamp":1741863709000},"update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":0,"title":["Presenting Clinical Information on Rare Chromosome 6 Disorders via a Parent\u2010Centered Website: Parental and Professional Views"],"prefix":"10.1002","volume":"197","author":[{"ORCID":"https:\/\/orcid.org\/0000-0003-0416-3416","authenticated-orcid":false,"given":"Eleana","family":"Rraku","sequence":"first","affiliation":[{"name":"Department of Genetics University of Groningen, University Medical Centre Groningen  Groningen the Netherlands"},{"name":"Department of Clinical Genetics Amsterdam University Medical Centre, University of Amsterdam  Amsterdam the Netherlands"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Aafke","family":"Engwerda","sequence":"additional","affiliation":[{"name":"Department of Genetics University of Groningen, University Medical Centre Groningen  Groningen the Netherlands"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Tyler D.","family":"Medina","sequence":"additional","affiliation":[{"name":"Department of Genetics University of Groningen, University Medical Centre Groningen  Groningen the Netherlands"},{"name":"Genomics Coordination Centre University of Groningen, University Medical Centre Groningen  Groningen the Netherlands"},{"name":"School of Mathematical and Statistical Sciences University of Galway  Galway Ireland"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Morris A.","family":"Swertz","sequence":"additional","affiliation":[{"name":"Department of Genetics University of Groningen, University Medical Centre Groningen  Groningen the Netherlands"},{"name":"Genomics Coordination Centre University of Groningen, University Medical Centre Groningen  Groningen the Netherlands"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Lennart F.","family":"Johansson","sequence":"additional","affiliation":[{"name":"Department of Genetics University of Groningen, University Medical Centre Groningen  Groningen the Netherlands"},{"name":"Genomics Coordination Centre University of Groningen, University Medical Centre Groningen  Groningen the Netherlands"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-8744-1305","authenticated-orcid":false,"given":"Conny M. 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