NAPS2 Recruitment, Education, and Outreach Core

NAPS2 招聘、教育和外展核心

• 批准号: 10457864
• 负责人: Aleksandar Videnovic
• 金额: $ 13.61万
• 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/10457864
• 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、教育和外联(REO)核心 快速眼动(REM)睡眠行为障碍(RBD)是临床上独有的基础睡眠障碍 生理上的重要性。北美前驱综合征核病(NAPS，阶段1)联盟是 成立于2018年，目标是为系统的多地点临床研究创建基础设施，重点是 RBD。已在10个NAPS1站点登记了200多名参与者。这是北美的前驱 突触核病联合会关于RBD，阶段2(NAPS2)的应用代表了一种扩展的多部位RBD 涉及八个核心和一个项目的临床研究计划。NAPS2的招募、教育和 外展(REO)核心是NAPS2联盟与研究参与者之间的联系，他们的 照顾者、专业社区和社区合作伙伴。REO核心支持NAP 1) 促进招募和留住不同的参与者参加国家方案2研究方案；2) 开展一系列旨在增进对RBD及其相关知识的了解的教育项目 以及3)提供丰富的外展努力，以促进长期和互利的发展 与关键利益相关者的关系，包括患有RBD和相关障碍的个人，他们的照顾者，以及 专业和非专业社区团体以及行业合作伙伴。选举事务处核心将会追求四个主要目标。目标 1将促进招募和留住不同的参与者人口，使之成为相关的研究方案 打个盹。将成立招聘、保留和多样性委员会，以评估和 就这些招聘策略提供建议。NAP注册表将由所有NAPS2创建和填充 参与者和其他对RBD感兴趣的患者。目标2将制定和实施教育举措 和培训机会。这一教育平台将在NASP2教育的监督下进行 委员会审议阶段。REO核心将促进以教育、REM睡眠为重点的RBD网络门户的开发 行为障碍教育提供(补救措施)。将特别重视普通教育。 有兴趣从事临床护理的医学界成员、初级临床医生和科学家 RBD及相关疾病的研究。目标3将创建和开展外展活动，目的是1)告知和 提高普通人对RBD和相关疾病的认识，同时培养对以下方面的良好态度 参与研究，以及2)与RBD和相关领域的关键利益相关者建立战略关系 精神错乱。管道开发工作组和公司圆桌会议将领导旨在 将RBD研究转化为RBD和突触核病的临床试验。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的和目的 并监测国家行动方案网站和其他数字平台的流量。