{"id":60914,"date":"2025-04-02T12:40:22","date_gmt":"2025-04-02T16:40:22","guid":{"rendered":"https:\/\/www.simonssearchlight.org\/?p=60914"},"modified":"2025-04-02T12:53:08","modified_gmt":"2025-04-02T16:53:08","slug":"new-orca-survey-measuring-communication-in-rare-neurodevelopmental-disorders","status":"publish","type":"post","link":"https:\/\/www.simonssearchlight.org\/2025\/04\/02\/new-orca-survey-measuring-communication-in-rare-neurodevelopmental-disorders\/","title":{"rendered":"New ORCA Survey: Measuring Communication in Rare Neurodevelopmental Disorders"},"content":{"rendered":"<p>&nbsp;<\/p>\n<p><span style=\"font-weight: 400;\">That\u2019s why <span class=\"notranslate\">Simons Searchlight<\/span> launched the Observer-Reported Communication Ability (ORCA) measure, <\/span><b>a caregiver-reported survey that empowers families to share their expert knowledge<\/b><span style=\"font-weight: 400;\"> and assess communication across all methods, including speech, signs, gestures, AAC devices, and more. ORCA focuses on three key areas:<\/span><\/p>\n<ul>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><strong>Expressive Communication<\/strong><span style=\"font-weight: 400;\"> \u2013 How an individual shares thoughts using speech, signs, gestures, sounds or devices.<\/span><\/li>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><strong>Receptive Communication<\/strong><span style=\"font-weight: 400;\"> \u2013 How an individual understands and processes spoken or signed language.<\/span><\/li>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><strong>Pragmatic Communication<\/strong><span style=\"font-weight: 400;\"> \u2013 How an individual uses communication in social interactions.<\/span><\/li>\n<\/ul>\n<p><span style=\"font-weight: 400;\">By capturing all forms of communication, ORCA offers a <\/span><b>more comprehensive<\/b><span style=\"font-weight: 400;\"> and accurate understanding of communication abilities in individuals with rare neurodevelopmental disorders.<\/span><\/p>\n<h3><strong>Why Your Participation Matters<\/strong><\/h3>\n<p><strong>By completing the ORCA survey, families can help researchers:<\/strong><\/p>\n<ul>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><span style=\"font-weight: 400;\">Identify patterns in how individuals communicate across different genetic conditions, including both verbal and nonverbal methods.<\/span><\/li>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><span style=\"font-weight: 400;\">Improve understanding of all communication abilities, from speech and gestures to AAC devices and other nonverbal forms.<\/span><\/li>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><span style=\"font-weight: 400;\">Guide the development of better, more robust resources and interventions for individuals with neurodevelopmental disorders, meeting them where they are in terms of communication.<\/span><\/li>\n<\/ul>\n<h3><strong>Quick and Easy to Complete<\/strong><\/h3>\n<p><span style=\"font-weight: 400;\">ORCA is designed to be straightforward and accessible for families. <strong>It takes just 10 to 15 minutes for a parent or caregiver to complete independently<\/strong>, without needing help from a doctor or speech-language pathologist.<\/span><\/p>\n<p><span style=\"font-weight: 400;\">Your voice matters! ORCA collects information that helps researchers shape future studies and build support systems that reflect our community\u2019s needs.<\/span><\/p>\n<h3><strong>How to Participate<\/strong><\/h3>\n<p><span style=\"font-weight: 400;\">If you&#8217;re a <span class=\"notranslate\">Simons Searchlight<\/span> participant and noted at registration or in the Brief Development Update that your dependent is nonverbal or minimally verbal, you\u2019ll see the ORCA survey assigned to you. <\/span><\/p>\n<p><strong>Log in to your <span class=\"notranslate\">Simons Searchlight<\/span> <a href=\"https:\/\/bit.ly\/Simons_Searchlight_Dashboard\">dashboard<\/a> today to learn more and complete ORCA.<\/strong><\/p>\n","protected":false},"excerpt":{"rendered":"<p>ORCA offers a more comprehensive and accurate understanding of communication abilities.<\/p>\n","protected":false},"author":18,"featured_media":60951,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_relevanssi_hide_post":"","_relevanssi_hide_content":"","_relevanssi_pin_for_all":"","_relevanssi_pin_keywords":"","_relevanssi_unpin_keywords":"","_relevanssi_related_keywords":"","_relevanssi_related_include_ids":"","_relevanssi_related_exclude_ids":"","_relevanssi_related_no_append":"","_relevanssi_related_not_related":"","_relevanssi_related_posts":"","_relevanssi_noindex_reason":"","footnotes":""},"categories":[30,26],"tags":[],"acf":[],"_links":{"self":[{"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/posts\/60914"}],"collection":[{"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/users\/18"}],"replies":[{"embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/comments?post=60914"}],"version-history":[{"count":10,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/posts\/60914\/revisions"}],"predecessor-version":[{"id":60965,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/posts\/60914\/revisions\/60965"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/media\/60951"}],"wp:attachment":[{"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/media?parent=60914"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/categories?post=60914"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/tags?post=60914"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}