Career Enhancement Core of GLIA-CTN

GLIA-CTN 职业提升核心

• 批准号: 10023214
• 负责人: Adeline Lucie Vanderver
• 金额: $ 12.42万
• 依托单位: CHILDREN'S HOSP OF PHILADELPHIA
• 依托单位国家: 美国
• 财政年份: 2019
• 资助国家: 美国
• 起止时间: 2019-09-30 至 2024-06-30
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10023214
• 关键词: Advocacy; Advocate; Affect; Award; Awareness; Caring; Clinical; Clinical Investigator; Clinical Research; Clinical Skills; Clinical Trials; Clinical Trials Network; Communities; Community Outreach; Development; Diagnosis; Education; Education and Outreach; Family; Family Caregiver; Financial Support; Foundations; Funding; Genomics; Geographic Locations; Goals; Guidelines; Health; Individual; Industry; Information Dissemination; Institution; Knowledge; Letters; Magnetic Resonance Imaging; Mentorship; Mission; Outcome; Patients; Pattern Recognition; Pilot Projects; Process; Program Development; Provider; Publishing; Readiness; Recommendation; Research; Research Personnel; Resolution; Scientist; Site; Structure; Therapeutic; Training; Training Programs; Translational Research; Travel; Wages; Work; care providers; career; career development; clinical care; clinical center; health disparity; improved; individual patient; interest; leukodystrophy; medical specialties; member; next generation; patient advocacy group; programs; symposium

Abstract The Global Leukodystrophy Initiative (GLIA) has made education and improved standards of care a key aspect of their mission. We acknowledge the importance of education and outreach related to the leukodystrophies across stakeholders, including patients, families, primary care providers and specialty providers. The GLIA consortium has published the only current comprehensive recommendations for standards of care across these conditions. Our investigators and their institutions have a longstanding commitment to educational efforts and community outreach. Advocacy partners participating in the GLIA Clinical Trials Network (GLIA-CTN) are also strong advocates for improved education. The GLIA-CTN career development program will leverage the input of the patient advocacy groups and our investigators to enhance knowledge of leukodystrophies within the community. Although a full resolution of educational needs in the leukodystrophy community is beyond the scope of this application, the GLIA-CTN will lay the groundwork for development of a multi-stakeholder educational approach through the following aims: Educational Aim 1: to develop a process to integrate relevant stakeholder input on development of educational programs including clinicians, researchers, patients and their families/ caregivers. Educational Aim 2: to establish a clinical investigator training program in the leukodystrophies to attract and train the next generation of researchers to advancing the care of individuals affected by the leukodystrophies.

摘要 全球脑白质营养不良倡议(GIIA)已将教育和提高护理标准作为关键 这是他们使命的一部分。我们认识到教育和宣传工作的重要性。 跨利益相关者的脑白质营养不良，包括患者、家庭、初级保健提供者和专科 供应商。Glia财团已经发布了目前唯一的全面建议 这些情况下的护理标准。我们的调查人员和他们的机构长期以来 致力于教育工作和社区外展。参与全球法律援助框架的倡导伙伴 临床试验网络(GILA-CTN)也是改善教育的强烈倡导者。Glia-CTN的职业生涯 开发计划将利用患者权益倡导团体和我们的调查人员的投入来增强 社区内的脑白质营养不良知识。尽管教育需求的全面解决 脑白质营养不良社区超出了这一应用范围，将为胶质细胞CTN的研究奠定基础 通过以下目标制定多方利益攸关方教育方法： 教育目标1：制定一个程序，以整合相关利益攸关方对发展的意见 教育项目包括临床医生、研究人员、患者及其家人/照顾者。 教育目标2：建立脑白质营养不良的临床研究人员培训计划，以吸引和 培训下一代研究人员，以促进对受脑白质营养不良影响的个人的护理。