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Comparative Autism Research Effectiveness (CARE) - CARE
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data-id="f096692" data-element_type="section"><div class="elementor-container elementor-column-gap-default"><div class="elementor-column elementor-col-100 elementor-top-column elementor-element elementor-element-0815652" data-id="0815652" data-element_type="column"><div class="elementor-widget-wrap elementor-element-populated"><div class="elementor-element elementor-element-92d5682 elementor-widget elementor-widget-heading" data-id="92d5682" data-element_type="widget" data-widget_type="heading.default"><div class="elementor-widget-container"><h1 class="elementor-heading-title elementor-size-default">Comparative Autism Research Effectiveness (CARE)</h1></div></div></div></div></div></section><section class="elementor-section elementor-top-section elementor-element elementor-element-7da33a3 elementor-section-boxed elementor-section-height-default elementor-section-height-default" data-id="7da33a3" data-element_type="section"><div class="elementor-container elementor-column-gap-default"><div class="elementor-column elementor-col-100 elementor-top-column elementor-element elementor-element-5bc01fa" data-id="5bc01fa" data-element_type="column"><div class="elementor-widget-wrap elementor-element-populated"><div class="elementor-element elementor-element-2d398d2 elementor-nav-menu__align-center elementor-nav-menu--dropdown-none elementor-widget elementor-widget-nav-menu" data-id="2d398d2" data-element_type="widget" data-settings="{"layout":"horizontal","submenu_icon":{"value":"<i class=\"fas fa-caret-down\"><\/i>","library":"fa-solid"}}" data-widget_type="nav-menu.default"><div class="elementor-widget-container"><nav aria-label="Menu" class="elementor-nav-menu--main elementor-nav-menu__container elementor-nav-menu--layout-horizontal e--pointer-underline e--animation-fade"><ul id="menu-1-2d398d2" class="elementor-nav-menu"><li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-home current-menu-item page_item page-item-1704 current_page_item menu-item-1970"><a href="https://care.therapistndc.org/" aria-current="page" class="elementor-item elementor-item-active">CARE Home</a></li><li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-1966"><a href="https://care.therapistndc.org/pcori-care-conference-speakers/" class="elementor-item">Conference Speakers</a></li><li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-2154"><a href="https://care.therapistndc.org/care-educational-webinars/" class="elementor-item">CARE Educational Webinars</a></li></ul></nav><nav class="elementor-nav-menu--dropdown elementor-nav-menu__container" aria-hidden="true"><ul id="menu-2-2d398d2" class="elementor-nav-menu"><li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-home current-menu-item page_item page-item-1704 current_page_item menu-item-1970"><a href="https://care.therapistndc.org/" aria-current="page" class="elementor-item elementor-item-active" tabindex="-1">CARE Home</a></li><li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-1966"><a href="https://care.therapistndc.org/pcori-care-conference-speakers/" class="elementor-item" tabindex="-1">Conference Speakers</a></li><li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-2154"><a href="https://care.therapistndc.org/care-educational-webinars/" class="elementor-item" tabindex="-1">CARE Educational Webinars</a></li></ul></nav></div></div></div></div></div></section><section class="elementor-section elementor-top-section elementor-element elementor-element-697982f elementor-section-boxed elementor-section-height-default elementor-section-height-default" data-id="697982f" data-element_type="section"><div class="elementor-container elementor-column-gap-default"><div class="elementor-column elementor-col-100 elementor-top-column elementor-element elementor-element-a047c7d" data-id="a047c7d" data-element_type="column"><div class="elementor-widget-wrap elementor-element-populated"><div class="elementor-element elementor-element-2ef4759 elementor-widget elementor-widget-spacer" data-id="2ef4759" data-element_type="widget" data-widget_type="spacer.default"><div class="elementor-widget-container"><div class="elementor-spacer"><div class="elementor-spacer-inner"></div></div></div></div></div></div></div></section><section class="elementor-section elementor-top-section elementor-element elementor-element-5d8ea78 elementor-section-boxed elementor-section-height-default elementor-section-height-default" data-id="5d8ea78" data-element_type="section"><div class="elementor-container elementor-column-gap-wide"><div class="elementor-column elementor-col-33 elementor-top-column elementor-element elementor-element-d9ad2d1" data-id="d9ad2d1" data-element_type="column"><div class="elementor-widget-wrap elementor-element-populated"><div class="elementor-element elementor-element-ca93f55 elementor-widget elementor-widget-image" data-id="ca93f55" data-element_type="widget" data-widget_type="image.default"><div class="elementor-widget-container"> <img fetchpriority="high" decoding="async" width="800" height="800" src="https://care.therapistndc.org/wp-content/uploads/sites/5/2023/10/2-Project-Comparative-Autism-Research-Effectiveness-CARE-1024x1024.png" class="attachment-large size-large wp-image-2536" alt="" srcset="https://care.therapistndc.org/wp-content/uploads/sites/5/2023/10/2-Project-Comparative-Autism-Research-Effectiveness-CARE-1024x1024.png 1024w, https://care.therapistndc.org/wp-content/uploads/sites/5/2023/10/2-Project-Comparative-Autism-Research-Effectiveness-CARE-300x300.png 300w, https://care.therapistndc.org/wp-content/uploads/sites/5/2023/10/2-Project-Comparative-Autism-Research-Effectiveness-CARE-150x150.png 150w, https://care.therapistndc.org/wp-content/uploads/sites/5/2023/10/2-Project-Comparative-Autism-Research-Effectiveness-CARE-768x768.png 768w, https://care.therapistndc.org/wp-content/uploads/sites/5/2023/10/2-Project-Comparative-Autism-Research-Effectiveness-CARE-1536x1536.png 1536w, https://care.therapistndc.org/wp-content/uploads/sites/5/2023/10/2-Project-Comparative-Autism-Research-Effectiveness-CARE.png 2000w" sizes="(max-width: 800px) 100vw, 800px" /></div></div></div></div><div class="elementor-column elementor-col-66 elementor-top-column elementor-element elementor-element-7976ffa" data-id="7976ffa" data-element_type="column"><div class="elementor-widget-wrap elementor-element-populated"><div class="elementor-element elementor-element-4ffeeff elementor-widget elementor-widget-text-editor" data-id="4ffeeff" data-element_type="widget" data-widget_type="text-editor.default"><div class="elementor-widget-container"><h3 style="text-align: center;"><strong><span style="color: #000000;">CARE</span> Conference Downloads</strong></h3><p style="text-align: left;"><a href="https://care.therapistndc.org/wp-content/uploads/sites/5/2023/10/Agenda-short-and-detailed-versions-7-research-questions_v2.pdf">CARE Conference Agenda</a> – This download has the short version of the conference schedule, a detailed version of the conference schedule, and the 7 questions participants will discuss.</p><p style="text-align: left;"><a href="https://care.therapistndc.org/wp-content/uploads/sites/5/2023/10/Zoom-Best-Practices-FINAL.pdf">Zoom Best Practices for Conference</a></p></div></div></div></div></div></section><section class="elementor-section elementor-top-section elementor-element elementor-element-4cf52d0 elementor-section-boxed elementor-section-height-default elementor-section-height-default" data-id="4cf52d0" data-element_type="section"><div class="elementor-container elementor-column-gap-default"><div class="elementor-column elementor-col-100 elementor-top-column elementor-element elementor-element-d10803d" data-id="d10803d" data-element_type="column"><div class="elementor-widget-wrap elementor-element-populated"><div class="elementor-element elementor-element-b73a4a8 elementor-widget elementor-widget-spacer" data-id="b73a4a8" data-element_type="widget" data-widget_type="spacer.default"><div class="elementor-widget-container"><div class="elementor-spacer"><div class="elementor-spacer-inner"></div></div></div></div></div></div></div></section><section class="elementor-section elementor-top-section elementor-element elementor-element-e930d65 elementor-section-boxed elementor-section-height-default elementor-section-height-default" data-id="e930d65" data-element_type="section"><div class="elementor-container elementor-column-gap-default"><div class="elementor-column elementor-col-100 elementor-top-column elementor-element elementor-element-b6765d2" data-id="b6765d2" data-element_type="column"><div class="elementor-widget-wrap elementor-element-populated"><div class="elementor-element elementor-element-09fa29a animated-slow elementor-invisible elementor-widget elementor-widget-text-editor" data-id="09fa29a" data-element_type="widget" data-settings="{"_animation":"rotateIn"}" data-widget_type="text-editor.default"><div class="elementor-widget-container"><h2 style="text-align: center;"><em>The <span style="color: #000000;">CAR</span><span style="color: #ad2a1a;"><span style="color: #000000;">E</span> </span>project’s goal is to radically flip the autism research narrative…</em></h2></div></div></div></div></div></section><section class="elementor-section elementor-top-section elementor-element elementor-element-f93582e elementor-section-boxed elementor-section-height-default elementor-section-height-default" data-id="f93582e" data-element_type="section"><div class="elementor-container elementor-column-gap-default"><div class="elementor-column elementor-col-16 elementor-top-column elementor-element elementor-element-b48f9f0" data-id="b48f9f0" data-element_type="column"><div class="elementor-widget-wrap"></div></div><div class="elementor-column elementor-col-66 elementor-top-column elementor-element elementor-element-1c8bee6" data-id="1c8bee6" data-element_type="column"><div class="elementor-widget-wrap elementor-element-populated"><div class="elementor-element elementor-element-4e7b993 elementor-widget elementor-widget-text-editor" data-id="4e7b993" data-element_type="widget" data-widget_type="text-editor.default"><div class="elementor-widget-container"><p style="text-align: left;">from a dehumanizing one where autistic people are defined as a “group of neurodevelopmental diseases” (Sauer et al., 2021) and where the autism research focuses on curative measures and eugenics (Spectrum 10k) to one that recognizes autism as a valuable form of neurodiversity, where the research centers on improving autistic mental health and self-determined quality of life outcomes, and significantly reducing victimization. </p><p>Our team:<br /> Project Lead: Dr. Alejandro Brice (an acquired neurodivergent from a subarachnoid hemorrhage);<br /> Co-Project Lead: Dr. D’Jaris Coles-White (a parent of two autistic sons); and<br /> Co-Project Lead: Julie Roberts, M.S., CCC-SLP (a formally late-diagnosed autistic woman).</p><p style="text-align: center;"><span style="font-size: 18pt;">We are all speech-language pathology researchers and clinicians. </span></p><p>CARE will connect consumers (autistic people, parents, and caregivers) with researchers and clinicians to evaluate the current focus of autism research and determine areas for improvement. Our project team will create modules that help consumers increase their understanding of autism research and inform autism researchers and clinicians about neurodiversity-related topics. Teams of researchers, consumers, and clinicians will come together in a virtual two-day conference to begin their collaboration and capacity building. Our goal is to have autistic people lead all PCORI grant and conference activities. </p></div></div></div></div><div class="elementor-column elementor-col-16 elementor-top-column elementor-element elementor-element-b1c0b56" data-id="b1c0b56" data-element_type="column"><div class="elementor-widget-wrap"></div></div></div></section><section class="elementor-section elementor-top-section elementor-element elementor-element-2b2c1ec elementor-section-boxed elementor-section-height-default elementor-section-height-default" data-id="2b2c1ec" data-element_type="section"><div class="elementor-container elementor-column-gap-default"><div class="elementor-column elementor-col-100 elementor-top-column elementor-element elementor-element-258c926" data-id="258c926" data-element_type="column"><div class="elementor-widget-wrap elementor-element-populated"><div class="elementor-element elementor-element-fc51fed elementor-widget elementor-widget-spacer" data-id="fc51fed" data-element_type="widget" data-widget_type="spacer.default"><div class="elementor-widget-container"><div class="elementor-spacer"><div class="elementor-spacer-inner"></div></div></div></div></div></div></div></section><section class="elementor-section elementor-top-section elementor-element elementor-element-7004670 elementor-section-boxed elementor-section-height-default elementor-section-height-default" data-id="7004670" data-element_type="section"><div class="elementor-container elementor-column-gap-default"><div class="elementor-column elementor-col-100 elementor-top-column elementor-element elementor-element-5fd7ec1" data-id="5fd7ec1" data-element_type="column"><div class="elementor-widget-wrap elementor-element-populated"><div class="elementor-element elementor-element-fd90030 elementor-drop-cap-yes elementor-widget__width-inherit elementor-drop-cap-view-default elementor-widget elementor-widget-text-editor" data-id="fd90030" data-element_type="widget" data-settings="{"drop_cap":"yes"}" data-widget_type="text-editor.default"><div class="elementor-widget-container"><h1 style="font-weight: 400; text-align: center;">CARE <span style="color: #000000;">Project Summary</span></h1><p>A team at the <a href="https://www.usf.edu/" target="_blank" rel="noopener">University of South Florida</a>, <a href="https://wmich.edu/about" target="_blank" rel="noopener">Western Michigan University</a>, and <a href="https://therapistndc.org/" target="_blank" rel="noopener">Therapist Neurodiversity Collective</a> (TNDC) has been approved for a $210,204 funding award through the Eugene Washington PCORI Engagement Awards (Engagement Awards) program, an initiative of the <a href="https://www.pcori.org/about/about-pcori" target="_blank" rel="noopener">Patient-Centered Outcomes Research Institute</a> (PCORI). The funds will support autistics, family, caregivers, researchers, and clinicians to prepare for neurodiversity topics.</p><p>Background: <br />Autistics, as consumers, must be able to provide their perspectives in the research process. When researchers and consumers work together, research becomes more appropriate for the autistic’s needs. Sometimes it is difficult for consumers and researchers to work together because of different backgrounds and experiences. It is especially important for autistics to have a voice in research through patient-centered outcomes research/comparative clinical effectiveness research (PCOR/CER) evidence-based practices and for researchers and clinicians to celebrate and not subjugate neurodiversity and neurodivergence.</p><p>Proposed Solution to the Problem:<br />The purpose of the Comparative Autism Research Effectiveness (<span style="color: #829356;">C</span><span style="color: #da621e;">A</span><span style="color: #107896;">R</span><span style="color: #ad2a1a;">E</span>) project is to connect consumers, i.e., autistics and caregivers, with researchers and clinicians to plan and evaluate effective research interventions. The project team will create modules that help consumers understand research and also prepare researchers and clinicians for neurodiversity topics. Then, the researchers will bring teams together in a virtual conference to begin their collaboration and further their capacity building.</p><p>Objectives: <br />The primary objectives of the project are to create 10 <span style="color: #829356;">C</span><span style="color: #da621e;">A</span><span style="color: #107896;">R</span><span style="color: #ad2a1a;">E</span> teams consisting of autistics, caregivers, researchers, and clinicians, to support the teams’ professional development around PCOR/CER and neurodiversity principles and to build relationships across these stakeholder groups for future collaboration related to autism PCOR/CER.</p><p>Activities: <br />The CARE teams will complete three training modules on PCOR/CER, neurodiversity, and autism. The teams will then participate in a two-day virtual conference to continue their capacity building and to codesign action plans to improve autism research neurodiverse collaboration. After the conference, teams will create research questions guided by the neurodiversity model of disability.</p><h3 style="font-weight: 400;">Project Outcomes and Outputs</h3><p>Short-term outcomes during the project period include:</p><ul><li>Project CARE will create researcher-person-partners teams with action plans for taking the steps they need to collaborate effectively in evidence-based CER. Project CARE will create a collaborative environment through an online conference that will be accessible to autistics, family/caregivers of autistics, autism researchers, and autism clinicians.</li><li>Project CARE will create three check-ups/follow-up points after the conference to further support the integration of actions as one of the products of this project. Outcomes will include reports and publications that will help disseminate the results of the project and also through PCOR/CER resources. The project team aims to disseminate findings regarding processes and products through the website of the Therapist Neurodiversity Collective (TNDC) website, an international association supporting autistic and neurodivergent therapy and research, which will house the project and promote the neurodiversity-based recommendations the project yields. The team will also write papers to distribute to other researchers and professionals about how to infuse principles of neurodiversity into their practice.</li></ul><p>Medium-term outcomes (zero to two years post-project period) include:</p><ul><li>The primary outcome of this project will be the creation of trained autistic-researcher-neurodiverse teams who can actively address CER in autism therapy.</li><li>Secondary outcomes from this project include knowledge about the training process and the conference actions that either facilitated or did not facilitate these autistic-researcher-neurodiverse teams.</li></ul><p>Long-term outcomes (three and more years post-project period) include:</p><ul><li>The team hopes that Project CARE will achieve health equity by engaging autistic stakeholders and autistic researchers in planning future research projects. Studying what matters to autistic stakeholders and what interventions are deemed most appropriate is crucial. Project CARE will continue communication through TNDC.</li></ul><p>Project CARE will utilize the following PCOR/CER resources:</p><ul><li>OCHIN- Engagement and Recruitment Guide</li><li>GRID Toolkit from Tulane University School of Public Health and Tropical Medicine</li><li>Digital Health Equity Toolkit from Harvard Medical School</li></ul><p>This project will modify and utilize a PCOR/CER Project CARE engagement toolkit for all autistic stakeholders. Use of the Project CARE Toolkit by others engaged with PCORI is a long-term outcome.</p><p>Project CARE will continue to disseminate information. TNDC will continue to host CARE materials beyond the end of the project. The TNDC web portal operates in the capacity of a learning management system that can share information and archive recorded presentations from the Project CARE conference. Dissemination of CARE outcomes is targeted toward better healthcare delivery systems concerning racial and ethnic disparities with autistic children, autistic adults, and other disabled people..</p><p>Patient and Stakeholder Engagement Plan: <br />Autistic children and their families and autistic adults are the most integral part of the project, especially because the Autistic Self Advocacy Network slogan is “nothing about us without us.” The CARE project embraces this slogan. The project lead is neurodivergent, one co-project lead is the parent of an autistic young person, and the second co-project lead is an autistic, licensed, and certified speech-language pathologist. In addition, the project’s advisory board consists of other autistic professionals and/or parents of autistic children and young adults. All training materials will be developed with input from the advisory board. 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