Developing a Down Syndrome Health Instrument
开发唐氏综合症健康仪器
基本信息
- 批准号:10392340
- 负责人:
- 金额:$ 16.64万
- 依托单位:
- 依托单位国家:美国
- 项目类别:
- 财政年份:2020
- 资助国家:美国
- 起止时间:2020-04-03 至 2025-03-31
- 项目状态:未结题
- 来源:
- 关键词:AcademyAdherenceAdverse effectsAgeAmericanBehavioralBiometryBody mass indexCaregiversCaringClinicClinicalClinical ResearchClinical TrialsClinical Trials NetworkCodeCommunitiesCongressesDataDevelopmentDiseaseDown SyndromeEffectiveness of InterventionsFaceFactor AnalysisFocus GroupsFoundationsFundingFutureGeneral HospitalsGeneral PopulationGoalsGoldGuidelinesHealthHealth StatusHealthy People 2020HeightIndividualInformation SystemsInternationalInterventionInterviewLearningLife ExpectancyMassachusettsMeasurableMeasurementMeasuresMedicalMedical Care CostsMedical GeneticsMedical RecordsMelissaMental HealthMentorsMetabolismMethodologyMinnesotaModelingObesityOutcomePaperParticipantPatient Outcomes AssessmentsPatientsPediatric HospitalsPediatricsPersonal SatisfactionPersonsPhysiciansPopulationPositioning AttributePrimary Care PhysicianPrimary Health CareProblem SolvingProcessProgram DevelopmentPsyche structureQuestionnairesRaceRegistriesReportingResearchResearch PersonnelResearch TrainingRiskRisk FactorsSamplingSchoolsScientistSelf AdministrationSiteSleepSleep Apnea SyndromesSocial Well-BeingStatistical Data InterpretationSurveysSyndromeTestingTimeTrainingUnited StatesUnited States National Institutes of HealthUniversitiesValidationValidity and ReliabilityWeightWell in selfWorkWorld Health Organizationbasecareercareer developmentcognitive interviewcohortcomorbiditydesigndimensional analysiseffectiveness evaluationexperiencehandicapping conditionimprovedinstructorinstrumentmedical schoolsmedical specialtiesmembernovelobesity riskpatient oriented researchpediatricianpopulation healthprogramsrecruitskillssocial factorstooltraitusabilityuser-friendly
项目摘要
Project Summary/Abstract
This proposal presents a five-year research career development program focused on the
development of a validated instrument to measure health status in Down syndrome (DS) to
expand the repertoire of measurements for future research including clinical trials. I am an
Instructor at Harvard Medical School and a clinical geneticist in the Division of Medical Genetics
and Metabolism at the Massachusetts General Hospital (MGH). The outlined proposal builds on
my previous research and clinical experience related to health surveillance in DS by integrating
the expertise of my primary mentor, Dr. Jonathan Winickoff, an expert in practice change, a
practicing pediatrician and experienced NIH-funded researcher, and additional mentoring team
members: Dr. Brian Skotko, an international DS expert, Dr. Melissa Constantine, an expert in
creating, designing and validating measurement instruments in the Division of Biostatistics,
Biostatical Design and Analysis Center at the University of Minnesota, and Dr. John Co, a
process improvement expert. The proposed research and training will position me with a unique
set of cross disciplinary skills that will enable me to transition to independence as a physician
scientist to study, measure, and improve the health of individuals with DS.
Although over 200,000 individuals with DS live in the United States, studies to date have
focused on outcomes apart from health. The foundation for this proposal is based on the need
to accurately measure health of all individuals – specifically, with DS – and the dearth of
available tools for this population. Creating such an instrument will provide a barometer of the
current state of health for DS and hold use in future research. In this project, I propose to create
an instrument that directly assesses health in DS – the Down syndrome Health Instrument
(DHI). More specifically, the aims of this proposal are: 1. To conduct focus groups among
caregivers, individuals with DS, panels of experts on DS and primary care physicians, and
cognitive interviews to refine a conceptual model of health for DS and create an item pool, 2. To
administer the DHI and establish internal validity, reliability, and external validity of the DHI for
use in clinical research, and 3. To test the usability of the DHI in two pilot settings: research and
clinical. This instrument will measure patient-reported health in DS for the first time and allow
measurement of health as an outcome which is not currently possible in this population. This
can identify gaps in care, then direct and optimize interventions that will improve care.
项目总结/文摘
项目成果
期刊论文数量(0)
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Stephanie Lynn Santoro其他文献
Stephanie Lynn Santoro的其他文献
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