Career Enhancement Core of GLIA-CTN

GLIA-CTN 职业提升核心

基本信息

批准号：
10266091
负责人：
Adeline Lucie Vanderver
金额：
$ 12.45万
依托单位：
CHILDREN'S HOSP OF PHILADELPHIA
依托单位国家：
美国
项目类别：
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/10266091
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 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 clinical trial readiness health disparity improved individual patient interest leukodystrophy medical specialties member next generation patient advocacy group programs symposium

项目摘要

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.

抽象的全球脑白质营养不良倡议 (GLIA) 将教育和提高护理标准作为关键他们使命的一个方面。我们认识到与以下方面相关的教育和宣传的重要性脑白质营养不良涉及患者、家庭、初级保健提供者和专业人士等利益相关者提供商。 GLIA 联盟发布了当前唯一的综合建议这些条件下的护理标准。我们的研究人员及其机构有着悠久的历史致力于教育工作和社区外展。参与 GLIA 的倡导合作伙伴临床试验网络 (GLIA-CTN) 也是改善教育的强烈倡导者。 GLIA-CTN 职业生涯开发计划将利用患者倡导团体和我们的研究人员的意见来加强社区内脑白质营养不良的知识。虽然全面解决了教育需求脑白质营养不良群体超出了本申请的范围，GLIA-CTN 将为通过以下目标制定多利益相关者教育方法：教育目标 1：制定一个流程，整合相关利益相关者对发展的投入教育计划，包括临床医生、研究人员、患者及其家人/护理人员。教育目标 2：建立脑白质营养不良临床研究者培训计划，以吸引和培训下一代研究人员，以推进对脑白质营养不良患者的护理。