Career Enhancement Core of GLIA-CTN

摘要 全球脑白质营养不良倡议（GLIA）将教育和提高护理标准作为一个关键， 这是他们使命的一部分。我们认识到， 利益相关者之间的脑白质营养不良，包括患者，家庭，初级保健提供者和专业 提供商GLIA联盟发布了目前唯一的全面建议， 这些条件下的护理标准。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LIA的宣传伙伴 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 发展计划将利用患者倡导团体和我们的研究人员的投入， 对脑白质营养不良的认识虽然全面解决教育需求， 脑白质营养不良社区超出了本申请的范围，GLIA-CTN将为 通过以下目标制定一种多利益攸关方的教育方法： 教育目标1：制定一个程序，将相关利益攸关方对发展 包括临床医生、研究人员、患者及其家属/护理人员的教育计划。 教育目标2：建立脑白质营养不良临床研究者培训计划， 培养下一代研究人员，以促进对受脑白质营养不良影响的个人的护理。

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.