Disability Community Engagement Partner Project-Pediatrics

残疾社区参与合作伙伴项目-儿科

基本信息

批准号：
10879969
负责人：
Charles Everet Drum
金额：
$ 65万
依托单位：
AMERICAN ASSN ON HEALTH AND DISABILITY
依托单位国家：
美国
项目类别：
财政年份：
2023
资助国家：
美国
起止时间：
2023-09-01 至 2028-08-30
项目状态：
未结题

来源：
https://reporter.nih.gov/project-details/10879969
关键词：
Address Adolescent Adoption Adult Age All of Us Research Program Area Authorization documentation Awareness Biological Models Biomedical Research Caring Child Childhood Clinical Collection Communication Communities Complex Consent Data Data Set Development Dimensions Disabled Children Disease Disease Progression Education Educational Activities Educational Curriculum Electronic Health Record Electronic Mail Enrollment Ensure Environment Evaluation Exclusion Family Foundations Funding Gatekeeping Genetic Health Health Personnel Health behavior change Healthcare Height Human Resources Incidence Infant Knowledge Life Style Link Longitudinal, observational study Measurement Medical Methods Modeling Modification Notification Observational Study Outcome Parents Participant Pediatrics Phase Population Prevalence Prevention strategy Process Provider Reporting Research Research Design Research Personnel Resources Role Sampling Scanning Self Direction Services Site Solid Specialist Surveys Theoretical model Time Training Trust United States United States National Institutes of Health Weight Work authority base cohort community engagement design disability diverse data experience follow-up health determinants implementation design individual variation innovation interest member novel strategies outreach patient engagement pediatrician precision medicine programs prospective recruit social socioeconomics success timeline treatment strategy

Address Adolescent Adoption Adult Age All of Us Research Program Area Authorization documentation Awareness Biological Models Biomedical Research Caring Child Childhood Clinical Collection Communication Communities Complex Consent Data Data Set Development Dimensions Disabled Children Disease Disease Progression Education Educational Activities Educational Curriculum Electronic Health Record Electronic Mail Enrollment Ensure Environment Evaluation Exclusion Family Foundations Funding Gatekeeping Genetic Health Health Personnel Health behavior change Healthcare Height Human Resources Incidence Infant Knowledge Life Style Link Longitudinal, observational study Measurement Medical Methods Modeling Modification Notification Observational Study Outcome Parents Participant Pediatrics Phase Population Prevalence Prevention strategy Process Provider Reporting Research Research Design Research Personnel Resources Role Sampling Scanning Self Direction Services Site Solid Specialist Surveys Theoretical model Time Training Trust United States United States National Institutes of Health Weight Work authority base cohort community engagement design disability diverse data experience follow-up health determinants implementation design individual variation innovation interest member novel strategies outreach patient engagement pediatrician precision medicine programs prospective recruit social socioeconomics success timeline treatment strategy

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项目摘要

ABSTRACT The National Institutes of Health (NIH) is building one of the most comprehensive, observational research initiatives ever conducted in the United States through the All of Us Research Project (AoURP). Once limited to adult participants, AoURP is expanding to include pediatric participants. The objective of the Disability Community Engagement Partner Project-Pediatrics (DCEPPPEDS) is to engage and facilitate the participation of the pediatric disability population in the AoURP to ensure better health outcomes and individualized health care for this population. Three Specific Aims have been identified for the project including: 1) Establishing and activating a Pediatric Disability Consortium; 2) Implementing a facilitated enrollment pilot program with CSHCN Families; and 3) Developing and implementing a CSHCN/ Disability and Effective Communication and Enrollment Practices Training Curriculum for AoU Consortium members. Project activities will be guided by a Pediatric Disability Consortium formed from disability organizations, pediatric clinical providers, and families (e.g., parents, guardians, conservators of children with disabilities). A comprehensive DCEPP-PEDS Outreach and Engagement Communications Plan will be developed and implemented across each year of the project. Several implementation and development models inform the project’s design and methods, including the Community and Participant Engagement (CPE) Framework, the transtheoretical model of health behavior change (TTM), the Point-to-Middle-to-Target (P-M-T) Model, and the Analysis, Design, Development, Implementation, and Evaluation (ADDIE) Model, and Landscape and Environmental Scan principles. The solid foundation of implementation and development models, key personnel with pediatric disability experience, staff with the lived experience of disability, and organizational experience, including the adult-focused Disability Community Engagement Partner Project (DCEPP), should ensure the success of the project.

抽象的美国国立卫生研究院（NIH）正在建立最全面，观察性的之一通过美国所有研究项目在美国开展的研究计划（Aourp）。一旦仅限于成年参与者，AOURP就会扩展到包括小儿参与者。残疾人社区参与伙伴项目 - 培养基（DCEPP PED）的目的是参与和促进小儿残疾人群参与 AOURP确保为该人群提供更好的健康结果和个性化的医疗保健。该项目已经确定了三个具体目标，包括：1）建立和激活小儿残疾财团； 2）实施便利的入学飞行员与CSHCN家庭的计划； 3）开发和实施CSHCN/残疾和有效的沟通和入学习惯培训AOU财团的课程成员。项目活动将由由残疾组成的小儿残疾财团指导组织，小儿临床提供者和家庭（例如，父母，监护人，保守党残疾儿童）。全面的DCEPP-PEDS宣传和参与沟通计划将在项目的每一年中制定和实施。几种实施和开发模型为项目的设计和方法提供了信息，包括社区和参与者参与（CPE）框架，跨理论健康行为变化的模型（TTM），点对点到目标（P-M-T）模型和分析，设计，开发，实施和评估（ADDIE）模型，以及景观和环境扫描原则。实施和开发模型的坚实基础，小儿的关键人员残疾经验，具有残疾现场经验和组织经验的员工，包括以成人为重点的残疾社区参与伙伴项目（DCEPP），应确保项目的成功。