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.
The Global Leukodystrophy Initiative Clinical Trials Network (GLIA-CTN) 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-CTN will develop a process to integrate relevant stakeholder input on development of educational programs and 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.
