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中文摘要
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自闭症谱系障碍(ASD)和双相情感障碍(BD)是两种最常见的严重精神障碍。 影响儿童和青少年的疾病。对于这两种情况,几乎没有循证治疗。 此外,对治疗的反应在个体之间差异很大,而且没有证据可以匹配 个别儿童进行特殊治疗。解决这些差距的研究-既要开发新的 治疗和更有效地匹配个人与治疗-将取决于识别生物标志物 或内表型,可以准确地识别更同质的患者亚组, 相关的家庭成员。 该试点的主要目的是确定最大限度地从儿童身上收集生物标本的最佳方法 有精神健康问题我们计划通过利用和扩展我们最近的工作来实现这一目标, MHRN 1对自闭症谱系障碍儿童家庭生物标本采集可行性的研究 (ASD)。我们将使用混合方法来开发低成本,量身定制的招募和同意 专门解决参与使用儿童生物标本的研究相关问题的流程 有精神健康状况,适合于大量和不同的人群。 具体目标1:使用来自MHRN 1自闭症患者生物标本采集可行性研究的数据 登记调查项目、MHRN 1中收集的网络调查数据和卫生系统电子病历 (EMR)数据,我们将研究儿童及其家庭的人口统计学和临床特征, 预测成功招募家庭参与生物标本采集。 具体目标2:探索关于生物库和感知促进者的知识、态度和信念, 来自不同地区的精神健康儿童的父母参与生物库的障碍 使用人种学/定性方法(访谈,焦点小组)的背景。 具体目标3:利用从目标1和2中获得的信息,我们将开发和试点测试, 招募有精神健康问题的儿童/青少年及其家人并征得其同意的方法 变成生物样本库供未来研究我们将专注于测试适用于大型企业的低成本方法。 不同的人群,如MHRN自闭症登记处或其他大型卫生系统。 子目标a:比较两种不同儿科的招募和知情同意方法的有效性 心理健康状况。
英文摘要
Autism Spectrum Disorder (ASD) and Bipolar Disorder (BD) are the two most common severe mental disorders affecting children and adolescents. Few evidence-based treatments exist for either condition. Furthermore, response to treatment vanes widely between individuals - and no evidence exists to match individual children with specific treatments. Research to address these gaps - both to develop new treatments and to more effectively match individuals with treatments - will depend on identifying biomarkers or endophenotypes that can accurately identify more homogeneous subgroups of patients and genetically related family members. The main aim of this pilot is to identify the best ways to maximize biospecimen collection from children with mental health conditions. We plan to meet this goal by leveraging and extending our recent work in MHRN1 on the feasibility of biospecimen collection from families of children with Autism Spectrum Disorder (ASD). We will use a mixed methods approach to develop low-cost, tailored recruitment and consenting processes that specifically address concerns about participating in studies using biospecimens from children with mental health conditions and that are appropriate to large and diverse populations. Specific Aim 1: Using data from a feasibility study of biospecimen collection from the MHRN1 Autism Registry survey project, web survey data collected in MHRN1, and health system electronic medical record (EMR) data, we will examine the demographic and clinical characteristics of children and their families predicting successful recruitment of families to participate in biospecimen collection. Specific Aim 2: Explore knowledge, attitudes and beliefs about biobanking and perceived facilitators and barriers to biobank participation among parents of children with mental health conditions from diverse backgrounds using ethnographic/qualitative methods (interviews, focus^groups). Specific Aim 3: Using information gained from Aims 1 and 2, we will develop and pilot test tailored methods for recruiting and consenting children/adolescents with mental health conditions and their families into a biospecimen bank for future research. We will focus on testing low cost methods appropriate for large diverse populations such as the MHRN Autism Registry or other large health systems. Sub AimSa: Compare effectiveness of recruitment and consenting methods across two different pediatnc mental health conditions.
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Mental Health Research Network III
Administrative Core
Methods Core
Mental Health Research Network III
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