What is GLIA-CTN? h1 >
Leukodystrophies are a complex, often progressive group of disorders affecting the white matter of the brain due to the loss or absence of myelin, the lipid membrane that insulates axons in the central nervous system. Despite advances in the diagnosis of these disorders, they remain widely under-recognized, with unmet gaps in clinical care and curative therapeutics.
The Global Leukodystrophy Initiative Clinical Trials Network (GLIA-CTN) is a consortium of scientists, industry stakeholders, and patient advocacy leaders working together to promote advances in the diagnosis and treatment of leukodystrophy. Specifically, it seeks to create a robust research infrastructure that will allow for the collection and analysis of longitudinal natural history data, development of novel clinical outcome assessments, and identification of surrogate biomarkers – ultimately paving the way for transformative therapeutic trials across the leukodystrophies.
In parallel to these approaches, the GLIA-CTN will work closely with a diverse group of stakeholders to promote disease awareness and education, advocate for the adoption of universal newborn screening and early diagnostic programs, and establish clinical guidelines to support the short- and long-term care of individuals living with leukodystrophies.
The GLIA-CTN is led by multiple investigators with decades of clinical research expertise and extensive leadership experience. They have the tools and resources to effectively manage all aspects of this complex research program.
Our investigators are considered experts in leukodystrophy care and research. They will work closely with each other - as well as our external stakeholders - to ensure the success of the GLIA-CTN.
The GLIA-CTN award is comprised of four well-defined projects designed develop tools and systems to meet the needs of future clinical trials in the leukodystrophies.
In its initial funding cycle, the GLIA-CTN will be comprised of nine (9) centers around the United States selected based on their extensive clinical and scientific resources for the leukodystrophies.