Career Enhancement Core of GLIA-CTN

GLIA-CTN 职业提升核心

基本信息

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
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/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

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.

抽象的全球白细胞营养不良计划（GLIA）使教育并改善了护理标准成为关键他们的使命的方面。我们承认与利益相关者的白细胞营养不良，包括患者，家庭，初级保健提供者和专业提供者。 GLIA联盟已发布了目前唯一的全面建议在这些条件下的护理标准。我们的调查人员及其机构有一个长期的致力于教育努力和社区宣传。参加神经胶质的倡导伙伴临床试验网络（GLIA-CTN）也是改善教育的强烈拥护者。 Glia-CTN职业开发计划将利用患者倡导小组和我们的研究人员的投入来增强对社区内白细胞营养不良的知识。虽然完全解决了教育需求白细胞病社区超出了该应用程序的范围，Glia-CTN将为通过以下目的开发多方利益相关者的教育方法：教育目标1：开发一个过程，以整合有关开发的相关利益相关者的意见教育计划，包括临床医生，研究人员，患者及其家庭/照顾者。教育目标2：在白细胞营养不良的临床研究者培训计划中吸引和培训下一代研究人员，以推进由白细胞营养不良影响的个人的照顾。