RCSLT要感谢研究重点工作组和DLD工作流程在制定和实施iDLD活动计划以及协助数据收集方面的参与和支持。RCSLT还想向所有参加会议并就DLD的研究重点发表意见的个人表示认可和感谢。我们还要衷心感谢花屋学校的教职员工和学生参与并协助拍摄本文随附的视频。

该协议旨在与人类参与者一起进行。研究小组向美国国家卫生研究所（NIHR）和詹姆斯林德联盟（JLA）寻求伦理批准建议。两者都指出，研究优先级的设定"被视为服务评估和发展"17 ，因此不需要伦理批准。
1. 第 1 步:将活动计划交付给 iDLD/iDLDPC
<ol><li>由于估计的执行时间不同，因此将活动作为在不同时间交付的独立活动（但应该是顺序的）执行，或作为连续程序（总共大约 90 分钟）交付。每个步骤都提供了估计的独立时间，但确切的时间将取决于iDLD / iDLDPC访问材料的能力以及专家DLD SLT所需的支持级别。 注意:将活动作为独立活动或连续计划交付的决定将由专家 DLD SLT 做出，使用临床判断根据对 iDLD/iDLDPC 特定语音、语言和沟通需求的深入了解来为决策提供信息。iDLD / iDLDPC具有良好的注意力和倾听技巧，可以同时参与多项活动或连续计划。注意力和听力技能较低的iDLD / iDLDPC可能最适合一次进行一两个独立活动。</li>
	<li>在整个协议中，专家DLD SLT被指示"酌情"使用通信支持。这些支持没有定义，但应由专家DLD SLT自行选择和提供，并且对于每个iDLD / iDLDPC的需求都是独一无二的。</li>
	<li>让专家 DLD SLT 选择适当的环境，根据 iDLD/iDLDPC 的临床判断（每个 iDLD/iDLDPC 10 分钟）提供活动计划。<ol><li>让专家DLD SLT深入修改他们可能邀请参加的iDLD / iDLDPC的特定语音，语言和通信需求的知识。</li>
		<li>让专家 DLD SLT 考虑 iDLD/iDLDPC 所需的通信支持级别。</li>
		<li>让专家 DLD SLT 决定他们将邀请哪些 iDLD/iDLDPC 参加，他们需要大量的一对一支持并计划在一对一环境中交付。</li>
		<li>让专家 DLD SLT 决定他们将邀请哪些不需要一对一支持且受益于同行支持和互动的 iDLD/iDLDPC 参与，并计划在小组环境中交付。 注意:协议的后续步骤可以在任一设置中使用。</li>
	</ol></li>
	<li>酌情向参与者介绍彼此，并介绍会议的目的，以促进建立融洽的关系。在整个过程中（10 分钟）根据需要使用通信支持。<ol><li>适当地向iDLD/iDLDPC介绍自己:"我的名字是xxx"。</li>
		<li>鼓励iDLD/iDLDPC适当地介绍自我，反过来:"现在轮到你了，你叫什么名字？</li>
		<li>向iDLD/iDLDPC介绍会议的广泛目标:"今天我们将讨论你想知道的最重要的事情，关于沟通"。</li>
		<li>使用 补充文件A通知iDLD / iDLDPC会议大纲:"首先，我们将讨论您是否要加入 - 这取决于您。然后，我们将做一些游戏和活动。</li>
		<li>通过项目信息手册与iDLD / iDLDPC讨论补充 文件B 。</li>
	</ol></li>
	<li>获得iDLD/iDLDPC的知情同意才能参加会议。在整个过程中（10 分钟）根据需要使用通信支持。<ol><li>通知iDLD/iDLDPC，他们可以决定是否参加:"你想和我谈谈这个吗？"你可以选择今天加入，也可以选择不加入。这取决于你";"如果你不愿意，那也没关系。"</li>
		<li>与iDLD/iDLDPC讨论同意书上的每个项目（iDLDPC的补充文件C ，或iDLDD的 补充文件D （或iDLDPC，如适用）。</li>
		<li>通过提出以下问题来审查和巩固iDLD/iDLDPC对会话，他们的权利和同意能力的理解:"告诉我我们今天在做什么？"你有什么问题吗？"</li>
		<li>支持 iDLD/iDLDPC 在同意的情况下签署同意书。对于iDLD，请事先征得iDLDPC的同意才能让孩子参与。如果不同意，iDLD/iDLDPC 选择参与其中之一，但其数据未被记录;或者可以停止参与。</li>
	</ol></li>
	<li>巩固和教授"言语，语言和沟通"的关键概念。在整个过程中（10 分钟）根据需要使用通信支持。<ol><li>告知iDLD/iDLDPC这项活动的重点:"下一次活动将侧重于言语、语言和交流"</li>
		<li>促进对以下问题的讨论:什么是"语音/语言/交流？利用SLT的专业知识和参与者的需求和激励因素的知识，让SLT选择游戏形式（步骤1.6.3）或讨论格式（步骤1.6.4）。根据需要使用 补充文件 E 。</li>
		<li>游戏形式:让iDLD/iDLDPC依次传递一个奖励对象（例如，一个闪烁的球），并解释:"当你拿着[对象]时，你可以告诉我们一些关于语音、语言或交流的事情"。</li>
		<li>讨论形式:询问iDLD/iDLDPC:"你认为'演讲'、'语言'或'交流'是什么意思？</li>
		<li>向iDLD/iDLDPC提供其他想法:"谈话就是交流";"签名就是沟通";"我们还能如何'沟通'？""你能不说话就交流吗？"或者"还有什么其他方式可以告诉别人我们的感受？"</li>
	</ol></li>
	<li>巩固和教授"发展性语言障碍或言语/语言/沟通困难"的关键概念。在整个过程中（10 分钟）根据需要使用通信支持。<ol><li>告知iDLD/iDLDPC此活动的重点（使用专家DLD SLT根据其个人历史使用iDLD / iDLDPC术语的历史决定的适当术语）:"在下一次活动中，我们将考虑我们发现的关于语音/语言/交流/DLD的困难/由于DLD而可能感到困难的事情。</li>
		<li>促进对以下问题的讨论:什么是语音/语言/交流或DLD？利用SLT的专业知识和参与者的需求和激励因素的知识，让SLT选择游戏形式（步骤1.7.3）或讨论形式（步骤1.7.4）。根据需要使用 补充文件 E 。</li>
		<li>游戏形式:让iDLD/iDLDPC依次传递一个奖励对象（例如，闪烁的球），并解释:"当你拿着[对象]时，你可以告诉我们一些关于语音、语言或交流的事情，因为DLD可能会觉得很难/困难"。</li>
		<li>讨论形式:询问iDLD/iDLDPC:"你认为有些人可能会觉得言语、语言或沟通有什么困难？</li>
		<li>向iDLD/iDLDPC提供其他想法，并酌情描述使用通信支持:"有些人发现很难记住单词";"有些人发现很难把单词按正确的顺序排列";"有些人发现很难与他们不太了解的人交谈"。</li>
		<li>可选:让SLT促进反思他们在言语，语言和沟通方面的困难:"你觉得沟通有什么困难？</li>
	</ol></li>
	<li>巩固和教授"言语和语言治疗"的关键概念。根据需要使用通信支持（10 分钟）。<ol><li>告知iDLD / iDLDPC此活动的重点:"下一个活动将侧重于描述什么是言语和语言治疗。</li>
		<li>促进对以下问题的讨论:什么是言语和语言治疗？利用SLT的专业知识和参与者的需求和激励因素的知识，SLT选择游戏形式（步骤1.8.3）或讨论形式（步骤1.8.4）。根据需要使用 补充文件 E 。</li>
		<li>游戏形式:让iDLD/iDLDPC依次传递一个奖励物体（例如，闪烁的球），并解释:"当你拿着[物体]时，你可以告诉我们一些关于言语和语言治疗的事情"。</li>
		<li>讨论形式:询问iDLD / iDLDPC他们对言语和语言治疗师/治疗这两个术语的理解。</li>
		<li>向iDLD / iDLDPC提供其他想法并描述:"您的言语和语言治疗师可能会帮助您进行交谈";"言语和语言治疗可能会帮助你在学校学习新单词"。</li>
		<li>可选:如果合适，让SLT促进反思他们对言语和语言治疗师/治疗的经历:"你喜欢言语和语言治疗的哪些方面？"你不喜欢言语和语言治疗的什么？""你会改变言语和语言治疗的什么"</li>
		<li>可选:如果合适，让SLT询问iDLD / iDLDPC:"你怎么知道你的言语和语言治疗是否有帮助？</li>
	</ol></li>
	<li>巩固和教授"研究"的关键概念。在整个过程中（10 分钟）根据需要使用通信支持。<ol><li>告知iDLD/iDLDPC这项活动的重点:"在下一次活动中，我们将了解'研究'一词"。</li>
		<li>促进对"研究意味着什么"这个问题的讨论。根据需要使用 补充文件 F 。</li>
		<li>以适当的详细程度描述iDLD/iDLDPC的"研究"的含义:"研究帮助我们回答问题。"研究是帮助我们发现事物的工作。""研究是试图找到问题的答案的过程，并以清晰、有组织、科学的方式进行"。根据需要使用 补充文件 F 。</li>
		<li>让 SLT 根据 iDLD/iDLDPC 的需要选择性地选择一个或多个活动（步骤 1.9.5、步骤 1.9.6）。</li>
		<li>向iDLD/iDLDPC提交报纸模板 补充文件G ，以方便解释"研究":"我们在新闻中被告知研究。"报纸经常告诉我们研究";"我们在新闻中发现了新的研究。</li>
		<li>提供有关研究的标题示例 iDLD/iDLDPC 的 补充文件 H ，以促进对"研究"的解释:"这里有一些研究 - '科学家发现治愈癌症的方法'";"这是标题'研究人员发现狗如何为你购物'——这是研究吗？";"'研究人员发现系自己的鞋子'怎么样？这是研究吗？</li>
		<li>向iDLD / iDLDPC解释会议的主要焦点:"所以今天我们将考虑告诉我们DLD /言语和语言困难的研究。如果适用，结合使用 补充 文件 E 和补充文件 H 。</li>
	</ol></li>
	<li>巩固和教授"优先"的关键概念。在整个过程中（10 分钟）根据需要使用通信支持。<ol><li>告知iDLD/iDLDPC这项活动的重点:"现在我们将考虑什么是'优先事项'"</li>
		<li>促进对以下问题的讨论:"如果某事是'优先事项'意味着什么？根据需要使用 补充文件 I 。</li>
		<li>SLT 根据需要选择性地选择一个或多个支持活动（步骤 1.10.4-1.10.7）。</li>
		<li>以适当的详细程度描述iDLD/iDLDPC的"优先级"的含义:"优先级对您来说非常非常重要。不是优先事项的事情对你来说并不重要。根据需要使用 补充文件 I 。</li>
		<li>将iDLD/iDLDPC与 补充文件J 作为刺激，以唤起对iDLD/iDLD什么是优先事项/什么是重要的决策。要求iDLD/iDLDPC考虑 补充文件J中描述的每个活动。询问iDLD/iDLDPC:"做[活动]是你的优先事项吗？</li>
		<li>询问iDLD / iDLDPC，并促进对以下问题的讨论:"您生活中的优先事项是什么？</li>
	</ol></li>
	<li>促进对以下问题的讨论:什么是"研究重点"？在整个过程中（10 分钟）根据需要使用通信支持。 注意:SLT可能会提供全部或部分这些步骤，具体取决于iDLD / iDLDPC的理解水平，由SLT使用临床专业知识决定，并酌情呈现。<ol><li>告知iDLD/iDLDPC这项活动的重点:"现在我们知道了研究，我们知道了优先事项。接下来，我们将思考"研究优先级"的含义。有不同类型的研究，人们会有不同的研究优先级。根据需要使用 补充文件 F 和 补充文件 G ，以提醒 iDLD/iDLDPC 以前的活动。</li>
		<li>问iDLD/iDLDPC:"你认为这些头条新闻是研究重点吗？"酌情使用 补充文件F，G和H 。</li>
		<li>让iDLD / iDLDPC考虑他们的研究重点:"通过研究，您最想了解什么？"你的研究重点是什么？这可能与你最喜欢的爱好、学校、你吃的食物或你的健康有关？";你认为有什么东西应该做更多的研究吗？根据需要使用 补充文件 F、G、H、& I 。</li>
		<li>向iDLD / iDLDPC解释:"会议的下一个重点是言语和语言治疗的研究重点。</li>
	</ol></li>
</ol>2. 第 2 步:专家 DLD SLT 收集有关 iDLD/iDLDPC 对 DLD 的研究重点的数据
<ol><li>与iDLD / iDLDPC一起开展评级活动，以确定研究重点。此步骤中提到的主题在本协议范围之外的研究优先级设定活动的早期阶段确定。在整个过程中适当地使用通信支持。</li>
	<li>告知iDLD / iDLDPC此活动的重点:"在下一次活动中，我们将考虑您认为哪些言语和语言治疗领域对我们最重要，以了解更多信息"</li>
	<li>依次使用主题卡（ 在补充文件K中）向iDLD/iDLDPC介绍主题（识别，评估，双语，干预，服务提供-小学，服务提供-中学，服务提供-成人，终身影响，技术，与他人合作，提高认识）。</li>
	<li>向iDLD / iDLDPC解释每个主题，在SLT认为必要时使用 补充文件K 促进理解:"第一个主题是我们如何确定某人是否觉得言语，语言或沟通困难。"下一个主题是在言语和语言治疗中使用计算机或平板电脑之类的东西"。</li>
	<li>为了进一步支持理解，如果SLT认为合适，请参阅补充文件L，以帮助描述它们:"让我们考虑一下'识别'可能意味着什么。这可能是关于找出一个发现学校困难的人......或者在课堂上行为不端......"</li>
	<li>向iDLD/iDLDPC提供比例表 补充文件I ，并解释:"这些数字可用于显示某事的'重要性'或'优先级'程度。</li>
	<li>依次向iDLD/iDLDPC提交单独的主题卡 补充文件K ，并征求他们的意见:"您认为了解有关[主题]的更多信息有多重要？它会在顶部 - 真的很重要/一个优先事项;或接近底部 - 不重要/不是优先事项。</li>
	<li>支持iDLD/iDLDPC根据他们对步骤2.6的回答，将主题卡（补充文件K）适当地放置在规模（补充文件I）上，并使用口头提示促进决策:"所以'评估'比'技术'更重要。是吗？<ol><li>继续验证并确认，直到放置所有主题。</li>
	</ol></li>
	<li>一旦所有主题都由iDLD / iDLDPC评级，通过讨论每个主题的评级来反馈并确认他们的决定。为他们提供进行任何更改的机会，突出显示并确认强优先级/非优先级（如果明显）:"您说过要了解更多信息的最重要的主题是[主题]。你说过最不重要的话题是[话题]。你觉得对吗？</li>
	<li>向iDLD出示参与证书（补充材料M）并记录其数据。</li>
</ol>3. 第 3 步:转换来自 iDLD/iDLDPC 的数据，以影响研究优先级设定工作的早期阶段
<ol><li>使用iDLD / iDLDPC优先级数据来告知其他利益相关者将在下一阶段的研究优先级设定工作中讨论的主题。</li>
	<li>整理来自 iDLD/iDLD 样本的所有主题评级，并计算每个主题的中位数评级以及所有主题的中位数范围。</li>
	<li>按大小对主题中位数进行排序，并在条形图上显示，以直观地检查是否存在任何明确优先级的主题，这些主题的中位数大大高于非优先级主题。例如，在主题之间的某个时间间隔内，中位数存在相当大的差异。</li>
	<li>考虑步骤 3.3 中的结果以及中位数范围，以帮助解释数据。例如，小于 6 的范围可能意味着评级相似的主题聚类，这可能表明没有明确的优先级。范围越大，可能意味着优先和非优先专题的区别更大。</li>
	<li>让研究小组使用步骤3.3和3.4中的知识来确定是否可以确定一个临界值，其中任何中值高于该截止值的主题都将结转到研究优先级设定工作的未来步骤。如果无法确定截断点，则应继续推进所有主题。</li>
</ol>4. 第 4 步:转换来自 iDLD/iDLDPC 的数据，以影响研究优先级设定工作的最后阶段
注意:对已定义研究领域的研究优先级设定调查的结果在本协议范围之外的研究优先级设定练习的临时阶段确定。
<ol><li>将已定义研究领域的研究优先级设置调查数据与iDLD / iDLDPC评级数据相结合，以确定十大研究重点。</li>
	<li>检查iDLD/iDLDPC各个主题评级的分布情况，以确定是否存在一个适当的分界点，该分界点可以代表区分"优先"和"非优先"主题的数字边界，与调查数据保持一致。临界值将取决于研究人员对自己数据的解释，在其他情况下可能会有所不同:低于8的评级表示"不是优先事项"，高于8的评级表示"优先级"。</li>
	<li>计算iDLD/iDLDPC对每个主题的评级高于截止点的频率（即，它被视为优先级的次数）。该频率是"校正值"。</li>
	<li>将定义的研究领域分配给一个或多个主题（但≤3）。分配的主题代表该定义研究领域内涵盖的广泛领域。例如，关于"通过远程治疗对小学学龄儿童进行干预"的定义研究领域可以分配给以下主题:干预、服务提供 - 小学和技术。</li>
	<li>将每个定义的研究区域的校正值（可能不止一个，具体取决于研究区域相关的主题数）添加到调查数据中。</li>
	<li>按大小对每个定义的研究区域的组合数据（现在包括调查数据和校正值）进行排序。得分最高的十个领域是十大研究重点。</li>
</ol>

<ol>
	<li>. Briefing paper: Language Disorder with a specific focus on Developmental Language Disorder Available from: <a target="_blank" href="https://www.rcslt.org/-/media/Project/RCSLT/language-disorder-briefing-paper.pdf">https://www.rcslt.org/-/media/Project/RCSLT/language-disorder-briefing-paper.pdf</a> (2020)</li><li>Bishop, D. V. M., Snowling, M. J., Thompson, P. A., Greenhalgh, T. <a target="_blank" href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=PubMed&cmd=Search&doptcmdl=Citation&defaultField=Title+Word&term=CATALISE-2+consortium.+Phase+2+of+CATALISE:+a+multinational+and+multidisciplinary+Delphi+consensus+study+of+problems+with+language+development:+Terminology.">CATALISE-2 consortium. Phase 2 of CATALISE: a multinational and multidisciplinary Delphi consensus study of problems with language development: Terminology.</a> J Child Psychol Psychiatry. 58, 1068-1080 (2017).</li><li>Lyons, R., Roulstone, S. <a target="_blank" href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=PubMed&cmd=Search&doptcmdl=Citation&defaultField=Title+Word&term=Well-being+and+resilience+in+children+with+speech+and+language+disorders.">Well-being and resilience in children with speech and language disorders.</a> Journal of Speech, Language and Hearing Research. 61, 324-344 (2018).</li><li>Durkin, K., Conti-Ramsden, G. <a target="_blank" href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=PubMed&cmd=Search&doptcmdl=Citation&defaultField=Title+Word&term=Language,+social+behaviour,+and+the+quality+of+friendships+in+adolescents+with+and+without+a+history+of+specific+language+impairment.">Language, social behaviour, and the quality of friendships in adolescents with and without a history of specific language impairment.</a> Child Development. 78 (5), 1441-1457 (2007).</li><li>Conti-Ramsden, G., Durkin, K., Toseeb, U., Botting, N., Pickles, A. <a target="_blank" href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=PubMed&cmd=Search&doptcmdl=Citation&defaultField=Title+Word&term=Education+and+employment+outcomes+of+young+adults+with+a+history+of+developmental+language+disorders.">Education and employment outcomes of young adults with a history of developmental language disorders.</a> International Journal of Language and Communication Disorders. 53 (2), 237-255 (2018).</li><li>. Standards of proficiency - Speech and language therapists Available from: <a target="_blank" href="https://www.hcpc-uk.org/resources/standards/standards-of-proficiency-speech-and-language-therapists/">https://www.hcpc-uk.org/resources/standards/standards-of-proficiency-speech-and-language-therapists/</a> (2020)</li><li>Law, J., Dennis, J. A., Charlton, J. J. V. <a target="_blank" href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=PubMed&cmd=Search&doptcmdl=Citation&defaultField=Title+Word&term=Speech+and+language+therapy+interventions+for+children+with+primary+speech+and/or+language+disorders.">Speech and language therapy interventions for children with primary speech and/or language disorders.</a> Cochrane Database Syst Rev. 1, (2017).</li><li>Ranson, M. K., Bennett, S. C. <a target="_blank" href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=PubMed&cmd=Search&doptcmdl=Citation&defaultField=Title+Word&term=Priority+setting+and+health+policy+and+systems+research.">Priority setting and health policy and systems research.</a> Health Res Policy Sys. 7 (1), 27 (2009).</li><li>Rugdan, I. <a target="_blank" href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=PubMed&cmd=Search&doptcmdl=Citation&defaultField=Title+Word&term=Setting+health+research+priorities+using+the+CHNRI+method:+IV.+Key+conceptual+advances.">Setting health research priorities using the CHNRI method: IV. Key conceptual advances.</a> J Glob Health. 6 (1), (2016).</li><li>Rowbotham, N. J., et al. <a target="_blank" href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=PubMed&cmd=Search&doptcmdl=Citation&defaultField=Title+Word&term=Adapting+the+James+Lind+Alliance+priority+setting+process+to+better+support+patient+participation:+an+example+from+cystic+fibrosis.">Adapting the James Lind Alliance priority setting process to better support patient participation: an example from cystic fibrosis.</a> Res Involv Engagem. 5 (24), (2019).</li><li>Chalmers, I., Atkinson, P., Fenton, M., Firkins, L., Crowe, S., Cowan, K. <a target="_blank" href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=PubMed&cmd=Search&doptcmdl=Citation&defaultField=Title+Word&term=Tackling+treatment+uncertainties+together:+the+evolution+of+the+James+Lind+Initiative+(JLI),+2003-2013.">Tackling treatment uncertainties together: the evolution of the James Lind Initiative (JLI), 2003-2013.</a> J R Soc Med. 106 (12), 482-491 (2013).</li><li>Crowe, S., Fenton, M., Hall, M., Cowan, K., Chalmers, I. <a target="_blank" href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=PubMed&cmd=Search&doptcmdl=Citation&defaultField=Title+Word&term=Patients',+clinicians'+and+the+research+communities'+priorities+for+treatment+research:+there+is+an+important+mismatch.">Patients', clinicians' and the research communities' priorities for treatment research: there is an important mismatch.</a> Res Involvem Engagem. 1 (2), (2015).</li><li>Tallon, D., Chard, J., Dieppe, P. <a target="_blank" href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=PubMed&cmd=Search&doptcmdl=Citation&defaultField=Title+Word&term=Relation+between+agendas+of+the+research+community+and+the+research+consumer.">Relation between agendas of the research community and the research consumer.</a> Lancet. 335, 2037-2040 (2000).</li><li>Madden, M., Morley, R. <a target="_blank" href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=PubMed&cmd=Search&doptcmdl=Citation&defaultField=Title+Word&term=Exploring+the+challenge+of+health+research+priority+setting+in+partnership:+reflections+on+the+methodology+used+by+the+James+Lind+Alliance+Pressure+Ulcer+Priority+Setting+Partnership.">Exploring the challenge of health research priority setting in partnership: reflections on the methodology used by the James Lind Alliance Pressure Ulcer Priority Setting Partnership.</a> Res Involv Engagem. 2 (12), (2016).</li><li>. NHS England's Research Needs Assessment 2018 by Strategy and Innovation Directorate Available from: <a target="_blank" href="https://www.england.nhs.uk/wp-content/uploads/2018/09/nhs-englands-research-needs-assessment-2018.pdf">https://www.england.nhs.uk/wp-content/uploads/2018/09/nhs-englands-research-needs-assessment-2018.pdf</a> (2020)</li><li>Elberse, J. E., Pittens, C. A., de Cock Buning, T., Broerse, J. E. <a target="_blank" href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=PubMed&cmd=Search&doptcmdl=Citation&defaultField=Title+Word&term=Patient+involvement+in+a+scientific+advisory+process:+setting+the+research+agenda+for+medical+products.">Patient involvement in a scientific advisory process: setting the research agenda for medical products.</a> Health Policy. 107, 231-242 (2012).</li><li>Harvey, N., Holmes, C. A. <a target="_blank" href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=PubMed&cmd=Search&doptcmdl=Citation&defaultField=Title+Word&term=Nominal+group+technique:+An+effective+method+for+obtaining+group+consensus.">Nominal group technique: An effective method for obtaining group consensus.</a> Int J Nurs Pract. 18 (2), 188-194 (2012).</li><li>Fourie, R., Crowley, N., Oliviera, A. <a target="_blank" href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=PubMed&cmd=Search&doptcmdl=Citation&defaultField=Title+Word&term=A+Qualitative+Exploration+of+Therapeutic+Relationships+from+the+Perspective+of+Six+Children+Receiving+Speech-Language+Therapy.">A Qualitative Exploration of Therapeutic Relationships from the Perspective of Six Children Receiving Speech-Language Therapy.</a> Top Lang Disord. 31 (4), 310-324 (2011).</li><li>Snape, D., et al. <a target="_blank" href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=PubMed&cmd=Search&doptcmdl=Citation&defaultField=Title+Word&term=Exploring+perceived+barriers,+drivers,+impacts+and+the+need+for+evaluation+of+public+involvement+in+health+and+social+care+research:+a+modified+Delphi+study.">Exploring perceived barriers, drivers, impacts and the need for evaluation of public involvement in health and social care research: a modified Delphi study.</a> BMJ Open. 4 (6), 004943 (2014).</li><li>Morris, C., et al. <a target="_blank" href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=PubMed&cmd=Search&doptcmdl=Citation&defaultField=Title+Word&term=Setting+research+priorities+to+improve+the+health+of+children+and+young+people+with+neurodisability:+a+British+Academy+of+Childhood+Disability-James+Lind+Alliance+Research+Priority+Setting+Partnership.">Setting research priorities to improve the health of children and young people with neurodisability: a British Academy of Childhood Disability-James Lind Alliance Research Priority Setting Partnership.</a> BMJ open. 5 (1), (2015).</li><li>Pollock, A., St. George, B., Fenton, M., Crowe, S., Firkins, L. <a target="_blank" href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=PubMed&cmd=Search&doptcmdl=Citation&defaultField=Title+Word&term=Development+of+a+new+model+to+engage+patients+and+clinicians+in+setting+research+priorities.">Development of a new model to engage patients and clinicians in setting research priorities.</a> J Health Serv Res Policy. 19 (1), 12-18 (2014).</li><li>. RCSLT Position Paper: Inclusive communication and the role of speech and language therapy Available from: <a target="_blank" href="https://www.rcslt.org/members/delivering-quality-services/inclusive-communication/inclusive-communication-guidance#section-8">https://www.rcslt.org/members/delivering-quality-services/inclusive-communication/inclusive-communication-guidance#section-8</a> (2020)</li><li>Mander, C. <a target="_blank" href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=PubMed&cmd=Search&doptcmdl=Citation&defaultField=Title+Word&term=.">.</a> The triangle of accessibility. Communication and Intellectual Disability Course Notes. , (2009).</li><li>. Royal College of Speech and Language Therapists. Research Priorities Available from: <a target="_blank" href="https://www.rcslt.org/members/research/research-priorities">https://www.rcslt.org/members/research/research-priorities</a> (2020)</li><li>Archibald, L. M. D. <a target="_blank" href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=PubMed&cmd=Search&doptcmdl=Citation&defaultField=Title+Word&term=Working+memory+and+language+learning:+A+review.">Working memory and language learning: A review.</a> Child Lang Teach Ther. 33 (1), 5-17 (2017).</li><li>Henry, L. A., Botting, N. <a target="_blank" href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=PubMed&cmd=Search&doptcmdl=Citation&defaultField=Title+Word&term=Working+memory+and+developmental+language+impairments.">Working memory and developmental language impairments.</a> Child Lang Teach Ther. 33 (1), 19-32 (2017).</li><li>Sowerbutts, A., Finer, A. <a target="_blank" href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=PubMed&cmd=Search&doptcmdl=Citation&defaultField=Title+Word&term=.">.</a> DLD and Me: Supporting Children and Young People with Developmental Language Disorder. , (2019).</li><li>Socol, Y., Shaki, Y. Y., Yanovskiy, M. <a target="_blank" href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=PubMed&cmd=Search&doptcmdl=Citation&defaultField=Title+Word&term=Interests,+Bias,+and+Consensus+in+Science+and+Regulation.">Interests, Bias, and Consensus in Science and Regulation.</a> Dose-Responnse. , (2019).</li><li>. Briefing notes for researchers: involving the public in NHS, public health and social care research Available from: <a target="_blank" href="https://www.invo.org.uk/wp-content/uploads/2014/11/9938_INVOLVE_Briefing_Notes_WEB.pdf">https://www.invo.org.uk/wp-content/uploads/2014/11/9938_INVOLVE_Briefing_Notes_WEB.pdf</a> (2020)</li><li>. UK standards for Public Involvement Available from: <a target="_blank" href="https://drive.google.com/file/d/1U-IJNJCfFepaAOruEhzz1TdLvAcHTt2Q/view">https://drive.google.com/file/d/1U-IJNJCfFepaAOruEhzz1TdLvAcHTt2Q/view</a> (2020)</li><li>Bunning, K., Steel, G. <a target="_blank" href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=PubMed&cmd=Search&doptcmdl=Citation&defaultField=Title+Word&term=Self-concept+in+young+adult+with+a+learning+disability+from+the+Jewish+community.">Self-concept in young adult with a learning disability from the Jewish community.</a> Br. J. Learn. Disabil. 35 (1), 43-49 (2007).</li><li>. Good Practice for Payment and Recognition Available from: <a target="_blank" href="https://www.invo.org.uk/good-practice-for-payment-and-recognition-things-to-consider/">https://www.invo.org.uk/good-practice-for-payment-and-recognition-things-to-consider/</a> (2020)</li><li>Gray-Burrows, K. A., Willis, T. A., Foy, R., Rathfelder, M., Bland, P., Chin, A., Hodgson, S., Ibegbuna, G., Prestwich, G., Samuel, K., Wood, L., Yaqoob, F., McEachan, R. <a target="_blank" href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=PubMed&cmd=Search&doptcmdl=Citation&defaultField=Title+Word&term=Role+of+patient+and+public+involvement+in+implementation+research:+a+consensus+study.">Role of patient and public involvement in implementation research: a consensus study.</a> BMJ quality &amp; safety. 27 (10), 858-864 (2018).</li><li>Blackburn, S., McLachlan, S., Jowett, S., Kinghorn, P., Gill, P., Higginbottom, A., Rhodes, C., Stevenson, F., Jinks, C. <a target="_blank" href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=PubMed&cmd=Search&doptcmdl=Citation&defaultField=Title+Word&term=The+extent,+quality+and+impact+of+patient+and+public+involvement+in+primary+care+research:+a+mixed+methods+study.">The extent, quality and impact of patient and public involvement in primary care research: a mixed methods study.</a> Research Involvement and Engagement. 4 (16), (2018).</li></ol>

作者没有披露要说明的内容。

这里介绍的方案反映了一种实验性的、新颖的方法，将iDLD/iDLDPC的观点纳入研究优先级设定工作。在其开发过程中，人们认为该协议的一个重要方面是由具有DLD专业技能的SLT执行步骤1和2，并且了解iDLD / iDLDPC的个性化支持需求。这旨在支持产出的有效性，从而影响研究优先次序确定过程的下一阶段。该协议指导执行基于证据的iDLD支持策略，旨在启动他们充分参与演习所需的技能和理解。此外，SLT可以将协议中的步骤修改为最适合每个人的水平。作为言语、语言和沟通需求方面的专家，SLT在这些步骤中的作用对于确保iDLD/iDLDPC理解这些概念并因此能够表达他们对它们的看法非常重要。虽然SLT被要求是:（a）DLD专家和（b）熟悉iDLD/iDLDPC，但这些必要条件的影响尚未得到评估，因此有可能在协议的未来复制中对其进行修改。然而，这种对专业知识、资源和能力的需求不太可能在标准的研究优先设定方案中提供，探索解决方案是有价值的。
该协议的介绍可能有助于未来的项目规划并将服务用户的意见纳入其研究优先级设置。但是，人们认识到，该协议可能会演变;在协议试点之后，进行了一些修改。这主要包括进一步完善步骤1中的活动计划。例如，在试点协议中，步骤1.6巩固和教授"语音，语言和交流"的关键概念基本上被省略了，但发现需要花费额外的时间来巩固某些iDLD / iDLDPC的这些概念，因此增加了一项活动。还发现，在此步骤中添加可能对iDLD / iDLDPC有额外的好处，因为DLD是一种相对较新的诊断2。因此，在诊断调整工作或社会心理支持有限的世界中，参与可以为iDLD/iDLDPC提供一个独特的机会，以更多地了解他们的诊断以及这对他们和其他人意味着什么28.可能会有其他创造性的修改，以增强参与iDLD/iDLDPC的体验或输出的有效性。我们预计，该协议的未来迭代可能会更加关注准备活动，以确保理解"研究"和"优先事项"等关键概念，特别是对于年轻的iDLD。与iDLD/iDLDPC进行会议时进行的思考表明，为本节开发的一些材料（例如， 补充文件H）引起了一定程度的混乱，可以通过更改"研究标题"的措辞使其更适合目的来进一步发展。
虽然目的是制定一个基于证据的协议，但在某些方面这样做存在挑战。例如，这适用于确定一种有意义的方法，将iDLD/iDLDPC的主题评级转换为定义的研究领域调查数据。这就需要一定程度的务实和判断，因为缺乏一种公认的、强有力的办法。人们认识到，协议的某些要素依赖于研究小组的共识。这与其他方法中采用的方法一致，特别是JLA PSP17。虽然在该协议中只是小规模的，但达成共识是一种本身存在缺陷的方法29.展望未来，可能会确定一种更可靠、有效和更严格的方法来转换这些数据。此外，很难真正确保描述活动计划的协议的保真度。iDLD中的支持通信应针对个人独特的优势和需求组合 进行个性化2，因此鉴于iDLD人群的异质性，该协议可能需要不断调整。
虽然人们认为该协议对个人需求的满足是有利的，并表明该协议可以用7岁及以上的iDLD进行，但人们承认，在传统的科学严谨性背景下，对不同的参与者采用不同的方法将被视为损害结果的可靠性。也很难确定iDLD/iDLDPC能够在多大程度上参与这项工作，以及它们的评级是有效和可靠的。对于一些iDLD/iDLDPC，特别是那些年轻或最近才知道自己诊断DLD的人来说，清楚地了解这对他们意味着什么是一个相当大的挑战。为尽量减少这些风险，已采取若干步骤，例如重复和合并活动。将来，可以采取措施来有力地捕获和评估这一点:评估SLT对每个iDLD/iDLDPC对评级的理解和真实性的信心，或者在不同的日期使用相同的iDLD/iDLDPC执行协议并比较结果。此外，最终参与的iDLD是学龄儿童，因此，虽然该协议的成功可能表明它对这个年龄组有用，但可能不适合推广到患有DLD的成年人。今后对此的审查将是有意义的。
虽然人们越来越关注纳入需要不同类型和水平支持才能获得研究参与的个人群体30 ，但对有言语、语言或沟通需求的个体进行调整的程度值得怀疑。虽然PPI指南倾向于强调与患者群体进行明确沟通的必要性（例如，英国PI标准31），但这通常旨在确保专业人员或研究人员提供的信息或术语风格可供"外行"使用。关于如何创建PPI协议的指南存在根本差距，这些协议可供有沟通困难的人使用。一些研究提出了让这些人群参与的方法，例如定性研究32 ，为这里介绍的方法提供了有用的背景。然而，鉴于"研究"和"研究重点"的抽象和元认知概念，研究优先级设置练习可能会给有沟通困难的人带来独特的挑战。该协议描述了一个可以采取的过程来解决这些挑战。
虽然iDLD获得了参与证书，但iDLD和iDLDPC没有因参与该议定书而获得经济奖励，这与良好做法相反33。这是因为在项目最初构思时，这种付款的预算没有得到充分评估。自那时以来，在2014年，大量证据进一步完善了患者和公众在研究中的作用34，特别是实施研究35，以及PPI36的成本和后果。这些建议包括与使用奖励有关的建议，包括对服务用户进行经济激励，旨在减少权力差异并赋予个人权力，并展示研究人员对他们的时间、承诺和专业知识的重视34.虽然没有提供经济奖励，但已采取步骤尽量减少iDLD/iDLDPC参与的潜在负担。例如，这些会议是在SLT的工作地点进行的，iDLDPC已经在那里会见或带走了他们的孩子，因此没有参与者产生任何费用。SLT在上课时间执行了iDLD的活动计划，因此iDLD或iDLDPC没有额外的时间压力来接送孩子往返课程。此外，SLT在孩子的常规"接送时间"之前或之后与iDLDPC会面，以尽量减少对参与者日程安排的干扰。对于该协议的未来复制，我们建议iDLD / iDLDPC参与有关他们希望如何获得奖励的对话，符合当前的指南33。
该协议的优点是，它提供了一个基于证据的框架，用于从iDLD / iDLDPC获得关于复杂主题的观点，可以出于多种目的进行复制。例如，用于进行后续的DLD研究优先级设定练习，或与有其他类型言语，语言和沟通需求的人进行研究优先级设定练习。重要的是，它也可以用作让iDLD / iDLDPC或类似人群参与更广泛意义上的研究的基础。

An erratum was issued for:&#160;<a href="https://www.jove.com/t/61267/involving-individuals-with-developmental-language-disorder-their">Involving Individuals with Developmental Language Disorder and their Parents/Carers in Research Priority Setting</a>. The tables in the Representative Results section were updated.

Erratum: Involving Individuals with Developmental Language Disorder and their Parents/Carers in Research Priority Setting

An erratum was issued for:&#160;<a href="https://www.jove.com/t/61267">Involving Individuals with Developmental Language Disorder and their Parents/Carers in Research Priority Setting</a>. The Authors section was updated from:
Katie E. Chadd1 
Amit A. Kulkarni1 
Lauren M. Longhurst1 
1Royal College of Speech and Language Therapists
to:
Katie E. Chadd1 
Amit A. Kulkarni1 
Lauren M. Longhurst1 
Mia Travlos2 
1Royal College of Speech and Language Therapists 
2Blossom House School

An erratum was issued for:&#160;<a href="https://www.jove.com/t/61267">Involving Individuals with Developmental Language Disorder and their Parents/Carers in Research Priority Setting</a>. The Authors section was updated.

发育性语言障碍 （DLD） 是一种多因素的终身疾病，其特征是难以理解和/或使用语言1。这可以表现在言语、语言和交流的任何或所有领域（例如，理解指令、找词或加入对话）2。因此，DLD （iDLD） 患者在心理健康方面遇到困难的风险增加3、人际关系4、教育程度和就业前景5.
iDLD及其父母/照顾者（iDLDPC）得到言语和语言治疗师（SLT）的支持，他们被要求采取循证方法进行实践6。然而，DLD证据基础7中存在许多差距。研究重点确定工作旨在解决此类情况，要求主要利益攸关方考虑最迫切需要哪些研究8.虽然一些研究优先级设定方法侧重于收集研究人员的"专家意见"9，但最近在英国的背景下，此类练习更通常在研究优先级设定伙伴关系中进行10.研究优先次序设定伙伴关系诞生于循证实践运动11，旨在解决学者，临床医生和卫生服务用户的研究议程之间的脱节问题12,13。将所有关键利益攸关方，包括服务使用者，聚集在一起，共同决定研究重点，提供了理论和实践的好处，提高了过程的相关性、质量和影响14.此外，让服务使用者参与研究优先级的设定是英国国家卫生服务15中公众和患者参与（PPI）的当务之急。因此，iDLD/iDLDPC参与这一领域的研究重点确定至关重要。
没有"健康研究的金标准方法......确定优先次序"14 但已经公布了几种方法。然而，iDLD/iDLDPC面临的沟通挑战使他们（或他们的意见）面临被这些方法排除在外的风险。例如，对话模式完全依赖于对服务使用者的深入访谈16.同样，詹姆斯·林德联盟优先设定伙伴关系（JLA PSP）方法17坚持纳入所有患者的声音，仍将给iDLD带来挑战。JLA PSP方法采用名义小组技术，要求参与者独立"集思广益"想法，口头表达，然后讨论它们18。可以合理地假设，当使用这些方法确定研究优先级时，iDLD/iDLDPC的有意义参与程度可能有限。
将iDLD/iDLDPC纳入标准化协议的另一个挑战是，即使有支持，每个人在语言和交流的不同方面都会表现出独特的优势和需求组合1。因此，一种方法不可能满足每个人的需要，使一些人面临被排斥的风险。在这里，提出了一种新颖的方法，该方法将差异化的教学和灵活性嵌入到其中心。被认为是该协议不可或缺的一部分是由对iDLD / iDLDPC的特定通信技能有详细了解的专家DLD SLT提供。这增强了可靠性并确保了SLT所具有的质量:在DLD方面工作的专业知识，技能和经验，并且已经与iDLD / iDLDPC19建立了治疗关系。这增加了SLT识别iDLD何时理解的可能性，以及SLT可以准确解释iDLD意见的可能性。
资源和时间经常被认为是服务使用者有意义地参与研究的障碍20.有复杂需求的个人可能尤其处于不利地位。英国儿童残疾学会在谈到他们的JLA PSP21时说:"我们的资源和时间不足以让儿童和年轻人有意义地参与"，但通过"充足的资源"和"精心规划"，有意义的参与本可以更大。Pollock，St George，Fenton，Crowe&Firkins22 调整了JLA协议，以满足对容量和资源的额外需求。他们的"免费茶"模式在PSP中实施了中风后的生活。这提供了一种替代的面对面方法，从服务用户那里获得数据，据认为比通过调查获得的数据要丰富得多。此外，Rowbotham等人10 证明了在线参与的成功，这对于囊性纤维化（CF）患者的健康参与至关重要，在CF JLA PSP。这些创新方法表明，当战略性地使用资源和时间时，有意义的参与会得到加强，最终产出会更多地反映服务用户的优先事项。
PPI文献中有充分的记录，象征主义很常见，这可能会轻视PPI20的影响和价值。该协议描述了iDLD / iDLDPC在多个阶段有意义地参与研究优先级设置活动的四步过程，从而降低了代币主义的风险:
第1步:SLT与iDLD/iDLDPC一起开展的活动计划，旨在发展他们对与研究重点相关的概念的理解; 第2步:收集关于研究重点的数据; 第 3 步:一种数据转换方法，以影响研究优先级设定过程的早期阶段; 第 4 步:一种影响研究优先级设定过程后期阶段的数据转换方法
为了管理步骤1和2，SLT是通过在组织的一般通信（例如，在线论坛）中通过广告招募的。SLT必须是英国6级（或以上）的专业DLD SLT，并且他们的案件中有iDLD / iDLDPC，他们熟悉并且可以同意参与。SLT参加了由研究小组（KC，AK，LL）提供的3小时培训课程，以熟悉该项目的理论方法，活动计划和使用的材料。为了最大限度地提高协议的可推广性，为iDLD/iDLDPC参与者指定了最小的排除标准。专家SLT就关键阶段2或以上（7岁+）的儿童将参与的标准达成共识，并且还将允许疑似或确诊DLD的iDLD参与。参与者的选择依赖于SLT对iDLD / iDLDPC是否能够访问活动的临床判断，即使根据纳入标准是否合适。
协议步骤1中描述的活动计划使用基于证据的包容性沟通方法，使用工具和策略来帮助iDLD理解和表达自己。对需求进行了规划，而不是做出反应，包容性传播战略始终如一地纳入了整个优先事项设定工作，例如在表格、在线传播和材料方面23.活动是根据无障碍支持三角形24制定的，并针对iDLD的个人优势和需求。该计划包括可选活动和可以以不同格式实施的活动，这些活动将由专家DLD SLT选择，以满足iDLD / iDLDPC的需求。这进一步认可了SLT独特的临床技能，知识和经验，优化了iDLD的通信能力24。协议的这一部分得到了 补充文件中的材料的支持。
协议步骤2中描述的数据收集活动基于关于DLD的11个"主题"，这些主题与先前对专业人员对DLD研究的"不确定性"的评估中确定的上级主题相关25。 iDLD/iDLDPC 在口头推理方面可能会遇到更大的困难26 因此，选择基于主题的方法而不是许多从属主题的呈现。在iDLD/iDLDPC27中，工作记忆也可能受损，因此为了支持iDLD/iDLDPC的决策，通过个人主题评级练习获得数据，然后在适当的时候进行比较排名练习。
步骤3提出了一个数据转换过程，通过确定其他利益相关者在过程的初始阶段应讨论的主题类型，使iDLD/iDLDPC对优先级的意见能够影响早期研究优先级的设定过程。这是通过检查iDLD / iDLDPC对11个DLD研究主题（从步骤2获得）的"优先级"水平的平均评分，并就参与者是否对高评级（即"优先"）主题达成足够共识。这次评价的目的是告知哪些专题（如果有的话）可以有效地被忽视，哪些议题在进程的后续阶段不予考虑，哪些议题应该向前推进。
最后一步描述使用相同的数据转换调查数据，以进一步反映iDLD/iDLDPC的优先级并影响最终输出。作为更广泛的研究优先级设定过程（超出本协议）的一部分，利益相关者制定了DLD的明确研究领域，他们随后通过在线调查投票选出他们认为优先的领域。每个定义的研究领域都与iDLD/iDLDPC先前评级的多个主题之一相关。iDLD / iDLDPC评级数据用于"提高"与高评级研究主题相关的特定研究领域的投票。
该协议专为那些计划为DLD设定研究优先级的人而设计，他们希望有意义地涉及iDLD / iDLDPC。需要获得专家 DLD SLT 及其 iDLD 和 iDLDPC 的临床病例量。它旨在补充整体研究优先级设定过程，收集其他数据，例如感兴趣的主题和确定的研究领域。建议采用项目组方法，以便进行分组决策。它也可以适应于在其他研究活动中与iDLD / iDLDPC或患有言语，语言和沟通障碍的不同人群一起使用。

<table>
	<tbody>
		<tr>
			<td>Supporting resources</td>
			<td>Royal College of Speech and Language Therapists</td>
			<td></td>
			<td></td>
		</tr>
	</tbody>
</table>

involving individuals with developmental language disorder and their parents/carers in research priority setting

提出了一种让患有发育语言障碍（DLD）（iDLD）的个人及其父母/照顾者（iDLDPC）参与研究优先级设定活动的协议。
iDLD在沟通技巧方面有困难，例如理解语言，找词和话语。这些困难意味着iDLD难以访问现有的研究优先级设置协议，因为它们需要复杂的沟通技巧。因此，有必要制定一种让iDLD参与这些练习的新协议。建议对 iDLDPC 使用相同的协议，以确保可访问性。
该协议分 4 个步骤呈现。第 1 步描述了由训练有素的专业 DLD 言语和语言治疗师 （SLT） 提供的活动计划，为参与 iDLD/iDLDPC 做好准备。第2步概述了一种征求iDLD / iDLDPC对研究重点的意见的方法。步骤3和4描述了在研究优先级设定过程的多个阶段分析和整合这些数据的方法。
9 名训练有素的专家 DLD SLT 交付了步骤 1 和 2。17个iDLD和25个iDLDPC同意参与。征求了所有参与者的意见，这些数据被用来影响练习的过程和产出。
该协议的一个优点是它通过选项菜单适应iDLD / iDLDPC支持需求的异构性，同时还提供了一个结构化的框架。由于协议的新颖性，数据集成的方法由研究小组开发。这些是协议的潜在局限性，可能会使可靠性和有效性受到审查，这些可靠性和有效性尚未经过测试。
该协议使iDLD / iDLDPC能够有意义地参与研究优先级的设定，并可用于具有其他类型语音，语言或交流需求的人。进一步的研究应评估该方案的有效性，以及它是否可以适用于这些人群参与其他研究。

Watch this Scientific Journal Video about Involving Individuals with Developmental Language Disorder and Their Parents/Carers in Research Priority Setting at JoVE.com

Involving Individuals with Developmental Language Disorder and Their Parents/Carers in Research Priority Setting

建立了一个协议，使发育语言障碍（DLD）患者及其父母/照顾者能够有意义地参与研究优先级设定活动。该协议包括一个明确的数据收集活动计划，以及将这些数据纳入更广泛的研究优先级设定过程的方法。

让发育性语言障碍患者及其父母/照顾者参与研究重点设定

A protocol for involving individuals presenting with developmental language disorder (DLD) (iDLD) and their parents/carers (iDLDPC) in a research priority ...

involving-individuals-with-developmental-language-disorder-their

Research

JoVE Journal

Medicine

3.4K 次观看.  Royal College of Speech and Language Therapists. 建立了一个协议，使发育语言障碍（DLD）患者及其父母/照顾者能够有意义地参与研究优先级设定活动。该协议包括一个明确的数据收集活动计划，以及将这些数据纳入更广泛的研究优先级设定过程的方法。

视频: Involving Individuals with Developmental Language Disorder and Their Parents/Carers in Research Priority Setting

Assessing Teratogenic Changes in a Zebrafish Model of Fetal Alcohol Exposure

Fetal alcohol syndrome (FAS) is a severe manifestation of embryonic exposure to ethanol. It presents with characteristic defects to the face and organs, including mental retardation due to disordered and damaged brain development. Fetal alcohol spectrum disorder (FASD) is a term used to cover a continuum of birth defects that occur due to maternal alcohol consumption, and occurs in approximately 4% of children born in the United States. With 50% of child-bearing age women reporting consumption of alcohol, and half of all pregnancies being unplanned, unintentional exposure is a continuing issue2. In order to best understand the damage produced by ethanol, plus produce a model with which to test potential interventions, we developed a model of developmental ethanol exposure using the zebrafish embryo. Zebrafish are ideal for this kind of teratogen study3-8. Each pair lays hundreds of eggs, which can then be collected without harming the adult fish. The zebrafish embryo is transparent and can be readily imaged with any number of stains. Analysis of these embryos after exposure to ethanol at different doses and times of duration and application shows that the gross developmental defects produced by ethanol are consistent with the human birth defect. Described here are the basic techniques used to study and manipulate the zebrafish FAS model.

In order to understand the molecular mechanisms of the ethanol-induced developmental damage, we have developed a zebrafish model of ethanol exposure and are exploring the physical, cellular, and genetic alterations that occur after ethanol exposure1. We then seek to find potential interventions and rapidly test them in this animal model.

在斑马鱼模型的胎儿酒精暴露评估致畸的变化

Fetal alcohol syndrome (FAS) is a severe manifestation of embryonic exposure to ethanol. It presents with characteristic defects to the face and organs, ...

科研

医学

Portable Intermodal Preferential Looking (IPL): Investigating Language Comprehension in Typically Developing Toddlers and Young Children with Autism

One of the defining characteristics of autism spectrum disorder (ASD) is difficulty with language and communication.1 Children with ASD's onset of speaking is usually delayed, and many children with ASD consistently produce language less frequently and of lower lexical and grammatical complexity than their typically developing (TD) peers.6,8,12,23 However, children with ASD also exhibit a significant social deficit, and researchers and clinicians continue to debate the extent to which the deficits in social interaction account for or contribute to the deficits in language production.5,14,19,25
Standardized assessments of language in children with ASD usually do include a comprehension component; however, many such comprehension tasks assess just one aspect of language (e.g., vocabulary),5 or include a significant motor component (e.g., pointing, act-out), and/or require children to deliberately choose between a number of alternatives. These last two behaviors are known to also be challenging to children with ASD.7,12,13,16
We present a method which can assess the language comprehension of young typically developing children (9-36 months) and children with autism.2,4,9,11,22 This method, Portable Intermodal Preferential Looking (P-IPL), projects side-by-side video images from a laptop onto a portable screen. The video images are paired first with a 'baseline' (nondirecting) audio, and then presented again paired with a 'test' linguistic audio that matches only one of the video images. Children's eye movements while watching the video are filmed and later coded. Children who understand the linguistic audio will look more quickly to, and longer at, the video that matches the linguistic audio.2,4,11,18,22,26
This paradigm includes a number of components that have recently been miniaturized (projector, camcorder, digitizer) to enable portability and easy setup in children's homes. This is a crucial point for assessing young children with ASD, who are frequently uncomfortable in new (e.g., laboratory) settings. Videos can be created to assess a wide range of specific components of linguistic knowledge, such as Subject-Verb-Object word order, wh-questions, and tense/aspect suffixes on verbs; videos can also assess principles of word learning such as a noun bias, a shape bias, and syntactic bootstrapping.10,14,17,21,24 Videos include characters and speech that are visually and acoustically salient and well tolerated by children with ASD.

Portable Intermodal Preferential Looking IPL: Investigating Language Comprehension in Typically Developing Toddlers and Young Children with Autism

A reliable home-based way to assess the language comprehension of very young typically developing children, as well as those with autism, is described. The method analyzes children's eye gaze while viewing side-by-side images but hearing an audio that matches only one image. Stimuli are designed with young participants in mind.

便携式联运优惠展望（IPL）:研究语言理解在通常情况下发展幼儿和儿童自闭症

One  of the defining characteristics of autism spectrum disorder (ASD) is difficulty  with language and communication.1  Children with ASD's onset of ...

Bronchoalveolar Lavage (BAL) for Research; Obtaining Adequate Sample Yield

We describe a research technique for fiberoptic bronchoscopy with bronchoalveolar lavage (BAL) using manual hand held suction in order to remove nonadherent cells and lung lining fluid from the mucosal surface. In research environments, BAL allows sampling of innate (lung macrophage), cellular (B- and T- cells), and humoral (immunoglobulin) responses within the lung.
BAL is internationally accepted for research purposes and since 1999 the technique has been performed in &#62; 1,000 subjects in the UK and Malawi by our group.
Our technique uses gentle hand-held suction of instilled fluid; this is designed to maximize BAL volume returned and apply minimum shear force on ciliated epithelia in order to preserve the structure and function of cells within the BAL fluid and to preserve viability to facilitate the growth of cells in ex vivo culture. The research technique therefore uses a larger volume instillate (typically in the order of 200 ml) and employs manual suction to reduce cell damage.
Patients are given local anesthetic, offered conscious sedation (midazolam), and tolerate the procedure well with minimal side effects. Verbal and written subject information improves tolerance and written informed consent is mandatory. Safety of the subject is paramount. Subjects are carefully selected using clear inclusion and exclusion criteria.
This protocol includes a description of the potential risks, and the steps taken to mitigate them, a list of contraindications, pre- and post-procedure checks, as well as precise bronchoscopy and laboratory techniques.

Bronchoalveolar Lavage BAL for Research; Obtaining Adequate Sample Yield

We describe a research technique for fiberoptic bronchoscopy and bronchoalveolar lavage using low pressure suction. The technique is used to harvest immune cells from the lung bronchoalveolar surfaces. Local anesthetic and mild conscious sedation (midazolam) is used. Subjects tolerate the procedure well and experience minimal side effects.

支气管肺泡灌洗（BAL）的研究，获得适当的采样率

We describe a research technique for fiberoptic bronchoscopy with bronchoalveolar lavage (BAL) using manual hand held suction in order to remove ...

Evaluation of Respiratory Muscle Activation Using Respiratory Motor Control Assessment (RMCA) in Individuals with Chronic Spinal Cord Injury

During breathing, activation of respiratory muscles is coordinated by integrated input from the brain, brainstem, and spinal cord. When this coordination is disrupted by spinal cord injury (SCI), control of respiratory muscles innervated below the injury level is compromised1,2 leading to respiratory muscle dysfunction and pulmonary complications. These conditions are among the leading causes of death in patients with SCI3. Standard pulmonary function tests that assess respiratory motor function include spirometrical and maximum airway pressure outcomes: Forced Vital Capacity (FVC), Forced Expiratory Volume in one second (FEV1), Maximal Inspiratory Pressure (PImax) and Maximal Expiratory Pressure (PEmax)4,5. These values provide indirect measurements of respiratory muscle performance6. In clinical practice and research, a surface electromyography (sEMG) recorded from respiratory muscles can be used to assess respiratory motor function and help to diagnose neuromuscular pathology. However, variability in the sEMG amplitude inhibits efforts to develop objective and direct measures of respiratory motor function6. Based on a multi-muscle sEMG approach to characterize motor control of limb muscles7, known as the voluntary response index (VRI)8, we developed an analytical tool to characterize respiratory motor control directly from sEMG data recorded from multiple respiratory muscles during the voluntary respiratory tasks. We have termed this the Respiratory Motor Control Assessment (RMCA)9. This vector analysis method quantifies the amount and distribution of activity across muscles and presents it in the form of an index that relates the degree to which sEMG output within a test-subject resembles that from a group of healthy (non-injured) controls. The resulting index value has been shown to have high face validity, sensitivity and specificity9-11. We showed previously9 that the RMCA outcomes significantly correlate with levels of SCI and pulmonary function measures. We are presenting here the method to quantitatively compare post-spinal cord injury respiratory multi-muscle activation patterns to those of healthy individuals.

Evaluation of Respiratory Muscle Activation Using Respiratory Motor Control Assessment RMCA in Individuals with Chronic Spinal Cord Injury

The purpose of this publication is to present our original work on a multi-muscle surface electromyographic approach to quantitatively characterize respiratory muscle activation patterns in individuals with chronic spinal cord injury using vector-based analysis.

评价呼吸肌慢性脊髓损伤个人使用呼吸电机控制评估（RMCA）

During breathing, activation of respiratory muscles is coordinated by integrated input from the brain, brainstem, and spinal cord. When this coordination ...

Utilizing Repetitive Transcranial Magnetic Stimulation to Improve Language Function in Stroke Patients with Chronic Non-fluent Aphasia

Transcranial magnetic stimulation (TMS) has been shown to significantly improve language function in patients with non-fluent aphasia1. In this experiment, we demonstrate the administration of low-frequency repetitive TMS (rTMS) to an optimal stimulation site in the right hemisphere in patients with chronic non-fluent aphasia. A battery of standardized language measures is administered in order to assess baseline performance. Patients are subsequently randomized to either receive real rTMS or initial sham stimulation. Patients in the real stimulation undergo a site-finding phase, comprised of a series of six rTMS sessions administered over five days; stimulation is delivered to a different site in the right frontal lobe during each of these sessions. Each site-finding session consists of 600 pulses of 1 Hz rTMS, preceded and followed by a picture-naming task. By comparing the degree of transient change in naming ability elicited by stimulation of candidate sites, we are able to locate the area of optimal response for each individual patient. We then administer rTMS to this site during the treatment phase. During treatment, patients undergo a total of ten days of stimulation over the span of two weeks; each session is comprised of 20 min of 1 Hz rTMS delivered at 90% resting motor threshold. Stimulation is paired with an fMRI-naming task on the first and last days of treatment. After the treatment phase is complete, the language battery obtained at baseline is repeated two and six months following stimulation in order to identify rTMS-induced changes in performance. The fMRI-naming task is also repeated two and six months following treatment. Patients who are randomized to the sham arm of the study undergo sham site-finding, sham treatment, fMRI-naming studies, and repeat language testing two months after completing sham treatment. Sham patients then cross over into the real stimulation arm, completing real site-finding, real treatment, fMRI, and two- and six-month post-stimulation language testing.

We explore the use of repetitive transcranial magnetic stimulation (rTMS) to improve language abilities in patients with chronic stroke and non-fluent aphasia. After identifying a site in the right frontal gyrus for each patient that responds optimally to stimulation, we target this site during ten days of rTMS treatment.

利用重复经颅磁刺激改善脑卒中患者的语言功能与慢性非流利性失语

Transcranial magnetic stimulation (TMS) has been shown to significantly improve language function in patients with non-fluent aphasia1. In this ...

Implanting Glass Spinal Cord Windows in Adult Mice with Experimental Autoimmune Encephalomyelitis

Experimental autoimmune encephalomyelitis (EAE) in adult rodents is the standard experimental model for studying autonomic demyelinating diseases such as multiple sclerosis. Here we present a low-cost and reproducible glass window implantation protocol that is suitable for intravital microscopy and studying the dynamics of spinal cord cytoarchitecture with subcellular resolution in live adult mice with EAE. Briefly, we surgically expose the vertebrae T12-L2 and construct a chamber around the exposed vertebrae using a combination of cyanoacrylate and dental cement. A laminectomy is performed from T13 to L1, and a thin layer of transparent silicone elastomer is applied to the dorsal surface of the exposed spinal cord. A modified glass cover slip is implanted over the exposed spinal cord taking care that the glass does not directly contact the spinal cord. To reduce the infiltration of inflammatory cells between the window and spinal cord, anti-inflammatory treatment is administered every 2 days (as recommended by ethics committee) for the first 10 days after implantation. EAE is induced only 2-3 weeks after the cessation of anti-inflammatory treatment.
Using this approach we successfully induced EAE in 87% of animals with implanted windows and, using Thy1-CFP-23 mice (blue axons in dorsal spinal cord), quantified axonal loss throughout EAE progression. Taken together, this protocol may be useful for studying the recruitment of various cell populations as well as their interaction dynamics, with subcellular resolution and for extended periods of time. This intravital imaging modality represents a valuable tool for developing therapeutic strategies to treat autoimmune demyelinating diseases such as EAE.

We describe a method for implanting and maintaining glass windows over the exposed spinal cords of adult mice for studying experimental autoimmune encephalomyelitis. These windows provide chronic optical access to the spinal cord for monitoring cell dynamics at the subcellular level in live animals using two-photon microscopy.

玻璃植入脊髓的Windows在成年小鼠实验性自身免疫性脑脊髓炎

Experimental autoimmune encephalomyelitis (EAE) in adult rodents is the standard experimental model for studying autonomic demyelinating diseases such as ...

Carotid Artery Infusions for Pharmacokinetic and Pharmacodynamic Analysis of Taxanes in Mice

When proposing the use of a drug, drug combination, or drug delivery into a novel system, one must assess the pharmacokinetics of the drug in the study model. As the use of mouse models are often a vital step in preclinical drug discovery and drug development1-8, it is necessary to design a system to introduce drugs into mice in a uniform, reproducible manner. Ideally, the system should permit the collection of blood samples at regular intervals over a set time course. The ability to measure drug concentrations by mass-spectrometry, has allowed investigators to follow the changes in plasma drug levels over time in individual mice1, 9, 10. In this study, paclitaxel was introduced into transgenic mice as a continuous arterial infusion over three hours, while blood samples were simultaneously taken by retro-orbital bleeds at set time points. Carotid artery infusions are a potential alternative to jugular vein infusions, when factors such as mammary tumors or other obstructions make jugular infusions impractical. Using this technique, paclitaxel concentrations in plasma and tissue achieved similar levels as compared to jugular infusion. In this tutorial, we will demonstrate how to successfully catheterize the carotid artery by preparing an optimized catheter for the individual mouse model, then show how to insert and secure the catheter into the mouse carotid artery, thread the end of the catheter out through the back of the mouse&#8217;s neck, and hook the mouse to a pump to deliver a controlled rate of drug influx. Multiple low volume retro-orbital bleeds allow for analysis of plasma drug concentrations over time.

This method was developed with the goal of delivering a steady drug solution via the carotid artery, to assess the pharmacokinetics of novel drugs in mouse models.

颈动脉输液的紫杉烷类化合物在小鼠体内的药代动力学和药效学分析

When proposing the use of a drug, drug combination, or drug delivery into a novel system, one must assess the pharmacokinetics of the drug in the study ...

Working with Human Tissues for Translational Cancer Research

Medical research for human benefit is greatly impeded by the necessity for human tissues and subjects. However, upon obtaining consent for human specimens, precious samples must be handled with the greatest care in order to ensure integrity of organs, tissues, and cells to the highest degree. Unfortunately, tissue processing by definition requires extraction of tissues from the host, a change which can cause great cellular stress and have major repercussions on subsequent analyses. These stresses could result in the specimen being no longer representative of the site from which it was retrieved. Therefore, a strict protocol must be adhered to while processing these specimens to ensure representativeness. The desired assay(s) must also be taken into consideration in order to ensure that an optimal technique is used for sample processing. Outlined here is a protocol for tissue retrieval, processing and various analyses which may be performed on processed tissue in order to maximize downstream production from limited tissue samples.

Translational cancer research is dependent on extraction of human tissues. Much work has gone into optimizing extraction methods for ex vivo analysis. Here, we describe tissue processing methods allowing for maximal data output from limited samples.

与人体组织转化为癌症研究工作

Medical research for human benefit is greatly impeded by the necessity for human tissues and subjects. However, upon obtaining consent for human ...

Adapted Resistance Training Improves Strength in Eight Weeks in Individuals with Multiple Sclerosis

Hip weakness is a common symptom affecting walking ability in people with multiple sclerosis (MS). It is known that resistance strength training (RST) can improve strength in individuals with MS, however; it remains unclear the duration of RST that is needed to make strength gains and how to adapt hip strengthening exercises for individuals of varying strength using only resistance bands. This paper describes the methodology to set up and implement an adapted resistance strength training program, using resistance bands, for individuals with MS. Directions for pre- and post-strength tests to evaluate efficacy of the strength-training program are included. Safety features and detailed instructions outline the weekly program content and progression. Current evidence is presented showing that significant strength gains can be made within 8 weeks of starting a RST program. Evidence is also presented showing that resistance strength training can be successfully adapted for individuals with MS of varying strength with little equipment.

Hip weakness is a common symptom affecting walking ability in people with multiple sclerosis. Isolated muscle strengthening is a useful method to target specific weaknesses. This protocol describes a progressive resistance-training program using exercise bands to increase hip muscle strength.

改编阻力训练提高力量在八周内的个人与多发性硬化症

Hip weakness is a common symptom affecting walking ability in people with multiple sclerosis (MS). It is known that resistance strength training (RST) can ...

Ex vivo Live Imaging of Lung Metastasis and Their Microenvironment

Metastasis is a major cause for cancer-related morbidity and mortality. Metastasis is a multistep process and due to its complexity, the exact cellular and molecular processes that govern metastatic dissemination and growth are still elusive. Live imaging allows visualization of the dynamic and spatial interactions of cells and their microenvironment. Solid tumors commonly metastasize to the lungs. However, the anatomical location of the lungs poses a challenge to intravital imaging. This protocol provides a relatively simple and quick method for ex vivo live imaging of the dynamic interactions between tumor cells and their surrounding stroma within lung metastasis. Using this method, the motility of cancer cells as well as interactions between cancer cells and stromal cells in their microenvironment can be visualized in real time for several hours. By using transgenic fluorescent reporter mice, a fluorescent cell line, injectable fluorescently labeled molecules and/or antibodies, multiple components of the lung microenvironment can be visualized, such as blood vessels and immune cells. To image the different cell types, a spinning disk confocal microscope that allows long-term continuous imaging with rapid, four-color image acquisition has been used. Time-lapse movies compiled from images collected over multiple positions and focal planes show interactions between live metastatic and immune cells for at least 4 hr. This technique can be further used to test chemotherapy or targeted therapy. Moreover, this method could be adapted for the study of other lung-related pathologies that may affect the lung microenvironment.