NAPS2 Recruitment, Education, and Outreach Core

点击翻译按钮获取中文摘要

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.