NAPS2 Recruitment, Education, and Outreach Core

NAPS2 招聘、教育和外展核心

• 批准号: 10187090
• 负责人: Aleksandar Videnovic
• 金额: $ 16.38万
• 依托单位: WASHINGTON UNIVERSITY
• 依托单位国家: 美国
• 财政年份: 2021
• 资助国家: 美国
• 起止时间: 2021-08-01 至 2026-04-30
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10187090
• 关键词: American; Area; Attitude; Awareness; Caregivers; Characteristics; Charge; Clinical; Clinical Research; Clinical Trials; Communities; Data; Development; Disease; Education; Education and Outreach; Enrollment; Ensure; Evolution; Fostering; Future; Goals; Individual; Infrastructure; Lead; Medical; Monitor; Nerve Degeneration; Neuroprotective Agents; Parasomnias; Participant; Patients; Physiological; Population; Protocols documentation; REM Sleep Behavior Disorder; Registries; Research; Scientist; Site; Supervision; Testing; Translating; clinical care; digital; effectiveness evaluation; improved; industry partner; interest; member; outreach; outreach program; programs; recruit; synucleinopathy; training opportunity; web portal; web site; working group

ABSTRACT: NAPS2 RECRUITMENT, EDUCATION AND OUTREACH (REO) CORE Rapid eye movement (REM) sleep behavior disorder (RBD) is unique parasomnia of clinical and basic physiological importance. The North American Prodromal Synucleinopathy (NAPS, stage 1) Consortium was formed in 2018 with goals of creating the infrastructure for a systematic, multisite clinical research centered on RBD. Over 200 participants have been enrolled across 10 NAPS1 sites. This North American Prodromal Synucleinopathy Consortium on RBD, Stage 2 (NAPS2) application represents an expanded multisite RBD clinical research program involving eight Cores and one Project. The NAPS2 Recruitment, Education and Outreach (REO) Core is a liaison between the NAPS2 Consortium and the research participants, their caregivers, the professional community, and community partners. The REO Core supports NAPS by 1) facilitating recruitment and fostering retention of diverse participants into the NAPS2 research protocol; 2) conducting a range of educational programs with goals of advancing understanding about RBD and related disorders; and 3) providing a rich outreach effort to foster development of long-standing and mutually beneficial relationship with key stakeholders, including individuals with RBD and related disorders, their caregivers, and professional and lay community groups, and industry partners. The REO Core will pursue four main aims. Aim 1 will facilitate recruitment and retention of a diverse participant population into research protocols associated with NAPS. The Recruitment, Retention and Diversity (RRD) Committee will be created to evaluate and advise on these recruitment strategies. The NAPS Registry will be created and populated by all NAPS2 participants and other interested patients with RBD. Aim 2 will develop and implement educational initiatives and training opportunities. This educational platform will be carried under supervision of the NASP2 Education Committee. The REO Core will facilitate development of the RBD web portal focused on education, REM Sleep Behavior Disorder Education Delivery (REMEDY). A special emphasis will be placed on education of general medical community members and junior clinicians and scientists interested in pursuing clinical care and research in RBD and related disorders. Aim 3 will create and perform outreach activities aimed to 1) inform and raise awareness of lay individuals about RBD and related disorders while nurturing favorable attitudes toward research participation, and 2) form strategic relationship with key stakeholders in the area of RBD and related disorders. The Pipeline Development Working Group and the Corporate Roundtable will lead activities aimed at translating RBD research into clinical trials for RBD and synucleinopathies. Aim 4 will evaluate the effectiveness of REO Core activities and programs. We will track characteristics of participants joining NAPS2, evaluate our educational and outreach programs to ensure that they meet the educational objectives and goals of the participants, and monitor traffic at NAPS website and other digital platforms.

摘要：NAPS2招聘，教育和外展（REO）核心 快速眼动（REM）睡眠行为障碍（RBD）是临床和碱性的独特寄生虫 生理重要性。北美前驱突触病（午睡，第1阶段）财团是 成立于2018年，其目标是为系统的多站点临床研究创建基础架构，以此为中心 RBD。在10个NAPS1站点中，已有200多名参与者参加。这个北美前驱 RBD上的突触核病联盟，第2阶段（NAPS2）应用代表扩展的多站点RBD 涉及八个核心和一个项目的临床研究计划。 NAPS2招聘，教育和 外展（REO）核心是NAPS2财团与研究参与者之间的联络 护理人员，专业社区和社区合作伙伴。 REO核心支持小睡1） 促进招聘并促进NAPS2研究协议中的不同参与者的保留； 2） 进行一系列教育计划，以促进对RBD及相关的理解的目标 疾病； 3）提供丰富的外展努力，以促进长期和互惠互利的发展 与主要利益相关者的关系，包括患有RBD和相关疾病的人，他们的照顾者以及 专业和外行社区团体以及行业合作伙伴。 REO核心将追求四个主要目标。目的 1将促进招募和保留不同的参与者人群与相关的研究方案 小睡。将成立招聘，保留和多样性（RRD）委员会来评估和 就这些招聘策略提供建议。午睡注册表将由所有NAPS创建和填充2 参与者和其他感兴趣的RBD患者。 AIM 2将制定和实施教育计划 和培训机会。该教育平台将在NASP2教育的监督下进行 委员会。 REO核心将促进RBD Web门户的开发，重点是教育，REM睡眠 行为障碍教育提供（补救措施）。将特别重点放在一般教育上 医学界成员和初级临床医生和科学家有兴趣寻求临床护理和 RBD和相关疾病的研究。 AIM 3将创建和执行针对1）通知和的外展活动 提高对外行人对RBD和相关疾病的认识，同时培养有利的态度 研究参与以及2）与RBD领域的主要利益相关者建立战略关系 疾病。管道开发工作组和公司圆桌会议将领导针对的活动 在将RBD研究转化为RBD和突触核心病的临床试验时。 AIM 4将评估 REO核心活动和计划的有效性。我们将跟踪加入NAPS2的参与者的特征， 评估我们的教育和外展计划，以确保它们符合教育目标和目标 参与者，并在午睡网站和其他数字平台上监视流量。