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Recent Episodes
GLIA-CTN: Developing a New Patient-Centered Approach to Clinical Trial Readiness in Aicardi-Goutières Syndrome
New research from the Global Leukodystrophy Initiative Clinical Trials Network (GLIA-CTN). This summary is based on a paper published in the journal Molecular Genetics and Metabolism in March 2026…
SP-CERN: Characterizing Movement Disorders and Treatment Responses in Aicardi-Goutières Syndrome
New research from the Spastic Paraplegia Centers of Excellence Research Network (SP-CERN). This summary is based on a paper published in the journal Annals of Clinical and Translational Neurology on…
UCDC: Investigating Self-Reported Health-Related Quality of Life in Adults with Urea Cycle Disorders
New research from the Urea Cycle Disorders Consortium (UCDC). This summary is based on a paper published in the Journal of Inherited Metabolic Disease on April 9, 2026, titled "Self-Reported…
IMPACT: Advancing Treatment in Congenital Thrombotic Thrombocytopenic Purpura
New research from The IMPACT Study. This summary is based on a paper published in the journal Research and Practice in Thrombosis and Haemostasis on January 20, 2026, titled "Optimizing the…
MGNet: Investigating the Impact of Demographic Trends on Disease Prognosis in Myasthenia Gravis
New research from the Myasthenia Gravis Rare Disease Network (MGNet). This summary is based on a paper published in the Journal of Neurology on March 23, 2026, titled "Half a century of change:…
NASCARR: Creating a Patient Registry to Improve Health Outcomes for Individuals with Sex Chromosome Aneuploidies
New research from the Network for Advancing Sex Chromosome Aneuploidy Research Readiness (NASCARR). This summary is based on a paper published in the American Journal of Medical Genetics in January…
SP-CERN: Characterizing the Spectrum of ATP1A3-Related Disorders
New research from the Spastic Paraplegia Centers of Excellence Research Network (SP-CERN). This summary is based on a paper published in the journal Movement Disorders on March 18, 2026, titled "The…
UCDC: Exploring the Impact of Ornithine Transcarbamylase Gene Variants in Asymptomatic Individuals
New research from the Urea Cycle Disorders Consortium (UCDC). This summary is based on a paper published in the journal HGG Advances on January 15, 2026, titled "Two commonly reported incidental…
GLIA-CTN: Investigating Language Skills in Children with Alexander Disease
New research from the Global Leukodystrophy Initiative Clinical Trials Network (GLIA-CTN). This summary is based on a paper published in the American Journal of Speech-Language Pathology on January…
SP-CERN: Evaluating the Use of Genome Sequencing in Diagnosing Children with Progressive Movement Disorders
New research from the Spastic Paraplegia Centers of Excellence Research Network (SP-CERN). This summary is based on a paper published in the journal Brain on February 5, 2026, titled "Diagnostic…
GLIA-CTN: Exploring the Use of Glial Fibrillary Acidic Protein as a Biomarker in Alexander Disease
New research from the Global Leukodystrophy Initiative Clinical Trials Network (GLIA-CTN). This summary is based on a paper published in the journal Annals of Clinical and Translational Neurology on…
GLIA-CTN: Reviewing Pathology and Interventions in Cerebral X-Linked Adrenoleukodystrophy
New research from the Global Leukodystrophy Initiative Clinical Trials Network (GLIA-CTN). This summary is based on a paper published in the Journal of Child Neurology in February 2026 titled…
NAMDC: Using a New Statistical Technique for Accelerometer Data to Assess a Treatment for Mitochondrial Disease
New research from the North American Mitochondrial Disease Consortium (NAMDC). This summary is based on a paper published in the journal Annals of Clinical and Translational Neurology in December…
SP-CERN: Assessing Health-Related Quality of Life in Children with Rare Forms of Hereditary Spastic Paraplegia
New research from the Spastic Paraplegia Centers of Excellence Research Network (SP-CERN). This summary is based on a paper published in the journal Annals of Clinical and Translational Neurology on…
SP-CERN: Investigating the ATG9A Ratio as a Diagnostic Tool for Adaptor Protein Complex 4–Associated Hereditary Spastic Paraplegia
New research from the Spastic Paraplegia Centers of Excellence Research Network (SP-CERN). This summary is based on a paper published in the journal Annals of Clinical and Translational Neurology on…
UCDC: Evaluating a New Food Photography App for Measuring Dietary Intake in Urea Cycle Disorders
New research from the Urea Cycle Disorders Consortium (UCDC). This summary is based on a paper published in the journal Molecular Genetics and Metabolism in December 2025 titled "Measuring dietary…
BBDC: Assessing Temporomandibular Joints in Patients with Osteogenesis Imperfecta
New research from the Brittle Bone Disorders Consortium (BBDC). This summary is based on a paper published in the journal Oral Surgery, Oral Medicine, Oral Pathology, and Oral Radiology on September…
SP-CERN: Evaluating Plasma Neurofilament Light Chain as a Biomarker for Hereditary Spastic Paraplegia-SPG11 and -ZFYVE26
New research from the Spastic Paraplegia Centers of Excellence Research Network (SP-CERN). This summary is based on a paper published in the journal Movement Disorders on December 9, 2025, titled…
SP-CERN: Exploring the Spectrum of Movement Disorders in Early-Onset Hereditary Spastic Paraplegia
New research from the Spastic Paraplegia Centers of Excellence Research Network (SP-CERN). This summary is based on a paper published in the journal Movement Disorders on December 2, 2025, titled…
CPIC: Exploring Prevention of Congenital Cytomegalovirus Infection
New research from the Congenital and Perinatal Infections Consortium (CPIC). This summary is based on a paper published in the journal Seminars in Fetal and Neonatal Medicine on September 25, 2025,…
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