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1/2 Development of a Screening Interview for Research Studies of ASD

1/2 Development of a Screening Interview for Research Studies of ASD
1/2 开发 ASD 研究筛选访谈
批准号:
7844115
负责人:
Catherine Lord
金额:
$61.71万
依托单位国家:
美国
项目类别:
财政年份:
2009
资助国家:
美国
项目状态:
已结题
起止时间:
2009-09-30 至 2011-08-31
关键词:
AddressAdolescentAdultAdvisory CommitteesAgeAge of OnsetAlgorithmsAmerican Psychological AssociationAnxietyAnxiety DisordersAppointmentAreaAttention deficit hyperactivity disorderAuthorshipAutistic DisorderBehaviorBehavioralBrainChildClinicClinicalClinical ResearchCollectionCommunicationCommunication impairmentCommunitiesConflict (Psychology)DataData CollectionData SetDatabasesDecision MakingDevelopmentDevice or Instrument DevelopmentDiagnosisDiagnosticDiagnostic and Statistical ManualDisciplineDiseaseDoctor of PhilosophyDown SyndromeEffectivenessElectronic MailEligibility DeterminationEnsureEtiologyEvaluationExhibitsFaceFacultyFamilyFellowshipFetal Alcohol SyndromeFollow-Up StudiesFoundationsFragile X SyndromeFundingGeneticGenetic screening methodGrowth and Development functionHousingHumanIndividualInfantIntellectual functioning disabilityInterventionInterviewInvestigationJointsKnowledgeLanguageLanguage DelaysLeadLeadershipLocationLongitudinal StudiesMeasuresMedical centerMethodsMichiganNational Institute of Mental HealthNational Institute on Deafness and Other Communication DisordersNew YorkPaperParentsParticipantPatientsPediatric HospitalsPediatricsPersonsPhenotypePhysiciansPopulationPositioning AttributePostdoctoral FellowPreschool ChildPrincipal InvestigatorProbabilityProblem behaviorProceduresPropertyPsychiatryPsychologyQualifyingQuestionnairesRandomized Controlled TrialsRecommendationRecordsRecruitment ActivityReportingResearchResearch DesignResearch Ethics CommitteesResearch PersonnelResearch Project GrantsResolutionResourcesRiskRoleSamplingSchool-Age PopulationScreening procedureSensitivity and SpecificityServicesSiteSourceSpecial EducationSpecificitySpeedStudentsSubgroupSymptomsTeleconferencesTelephoneTestingTimeToddlerTrainingTravelTriageUnited States Health Resources and Services AdministrationUnited States National Institutes of HealthUniversitiesValidationVisitWalkingWisconsinWorkautism spectrum disorderbaseclinical Diagnosisexperiencegraduate studentinstrumentinterestmedical specialtiesmeetingsnew technologyphrasesprofessorprogramspublic health relevancerepositoryresearch studyresponseservice interventionsocialsocial communicationteachertertiary carevirtual

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中文摘要
翻译
描述(由申请人提供):为了加强遗传学研究和其他大规模病因学研究的参与者招募工作,需要一种能够实用和有效地用于自闭症谱系障碍(ASD)研究的工具。目前的提案旨在开发一种研究筛查工具,该工具基于修订的自闭症诊断访谈中的问题(ADI-R;Rutter等人,2003),但这大大缩短了时间,更容易管理。新开发的ADI研究筛选面试将适合在面对面或电话中使用。ADI研究筛查访谈的开展将涉及患有自闭症和非自闭症诊断的两个大样本。将使用对患有自闭症儿童的总共979项评估和对非自闭症儿童的257项评估的现有数据来开发该工具。将从正在进行的研究和专业诊断诊所招募大约180名患有自闭症的参与者和240名非自闭症患者组成的单独小组来测试新的测量方法。鉴于最近的研究发现,患有某些非自闭症的儿童经常被ASD筛查和诊断措施错误分类(例如,Towbin等人,2005年;Bishop等人,2007年),这项建议的一个特别优势是招募有针对性的非自闭症儿童,包括智力残疾(ID)、注意力缺陷多动障碍(ADHD)、焦虑症和早期发展风险群体。随着新技术的出现,使得基因检测更容易获得,成本更低,研究人员越来越多地呼吁找到一种方法,首先对大量人群进行ASD快速筛查,然后在分析基因测试后进行更密集的表型分析。具有高灵敏度和高特异度的诊断筛查工具的可用性将极大地减少目前确定ASD研究参与者的诊断状态所需的时间和费用。通过电话管理筛查方案的选择将有助于接触到更多不同的参与者群体,对他们来说,旅行可能不太可行,而且在ASD研究中传统上代表不足。 公共卫生相关性:这项提议将导致开发一种新的筛查工具,以识别患有自闭症谱系障碍(ASD)的儿童。目前正在进行几项调查,以更好地了解自闭症的原因。其中许多研究需要非常多的参与者;然而,目前确定此类研究参与者的方法往往既昂贵又耗时,而且需要密集的培训。为了解决这些问题,我们的目标是创建一个简短的家长访谈,可以通过电话进行管理,以快速确定ASD研究的潜在参与者。这一新工具将通过提高参与者招募工作的速度和有效性,促进对自闭症病因的研究。此外,这种仪器还可能在临床上有其他实际用途。在等待ASD评估的时间非常长或当地没有诊断评估资源的社区,可以通过电话管理的有效筛查工具可能有助于对需要进一步评估的儿童进行分类,和/或用于在稍后进行更全面的诊断评估之前,使儿童有资格获得某些干预服务。
英文摘要
DESCRIPTION (provided by applicant): To enhance participant recruitment efforts for genetics studies and other large- scale etiological research efforts, there is a need for an instrument that can be practically and efficiently employed in research studies of autism spectrum disorders (ASD). The current proposal aims to develop a research screening instrument that is based on questions from the Autism Diagnostic Interview-Revised (ADI-R; Rutter et al., 2003), but that is substantially shorter and easier to administer. The newly developed ADI Research Screening Interview will be appropriate for use in person or on the telephone. Development of the ADI Research Screening Interview will involve two large samples of children with ASD and non-ASD diagnoses. Existing data from a total of 979 assessments of children with ASD and 257 assessments of children with non-ASD diagnoses will be used to develop the instrument. A separate group of approximately 180 participants with ASD and 240 with non-ASD diagnoses will be recruited from ongoing research studies and specialty diagnostic clinics to test the new measure. Given recent findings that children with certain non-ASD diagnoses are often misclassified by ASD screening and diagnostic measures (e.g., Towbin et al., 2005; Bishop, et al., 2007), a particular strength of this proposal is the recruitment of children with targeted non-ASD diagnoses, including intellectual disability (ID), attention deficit hyperactivity disorder (ADHD), anxiety disorder, and an early developmental risk group. With the advent of new technologies making genetic testing more accessible and less expensive, researchers are increasingly calling for a way to rapidly screen large populations for ASD first, and then carry out more intensive phenotyping after genetic tests are analyzed. The availability of a diagnostic screening instrument with high levels of sensitivity and specificity will dramatically reduce the time and expense that is currently required to determine diagnostic status of ASD research participants. The option of administering the screening protocol by telephone will facilitate access to more diverse participant populations for whom travel may be less feasible and who are traditionally under-represented in ASD research. PUBLIC HEALTH RELEVANCE: This proposal will result in the development of a new screening instrument to identify children with autism spectrum disorders (ASD). Several investigations are currently underway in order to better understand the causes of ASD. Many of these studies require very large numbers of participants; however, current methods for identifying participants for such studies are often expensive and time-consuming and require intensive training. To address these issues, we aim to create a short parent interview that can be administered on the telephone to quickly identify potential participants for ASD research. This new instrument will facilitate research into ASD etiology by increasing the speed and effectiveness of participant recruitment efforts. In addition, such an instrument may have other practical uses clinically. In communities where the wait for an ASD evaluation is extremely long or there are no local resources for diagnostic evaluations, an efficient screening instrument that could be administered by phone might help triage children in need of further evaluation and/or be used to qualify children for certain intervention services pending a more complete diagnostic evaluation at a later time.
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会议论文
Family caregivers in later life: A longitudinal study of well-being and mental health in families of adults with autism and developmental disabilities
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