The Hunter’s Hope Foundation Leukodystrophy Care Network (LCN) Clinical Practice Guidelines (CPGs) establish published, peer-reviewed standards of care to ensure individuals with leukodystrophies receive the best possible medical treatment—improving both length and quality of life.
The LCN supports its accredited Centers in delivering consistent, evidence-based care by providing guidelines informed by the latest research, medical data, and expert consensus on best practices.
The CPG focus areas were identified through the LCN’s Clinical Issues Survey, which gathered input from more than 300 individuals affected by leukodystrophies. Each guideline is developed by Lead Authors and workgroups made up of family advocates and medical providers from LCN Candidate Centers.
The CPGs are an ongoing initiative, continually updated to reflect new knowledge and to further advance the standard of care for individuals living with leukodystrophy.
Clinical Practice Guidelines
Krabbe Newborn Screening (NBS)
CPGs for Krabbe NBS, along with other publications can be found here.
Diagnosis
Early Signs and Symptoms of Leukodystrophies: A Case-Based Guide
Treatment
Hematopoietic Stem Cell Transplantation to Treat Leukodystrophies
Neurology
Practical Approaches and Knowledge Gaps in the Care for Children with Leukodystrophies
Risk of Seizures and Epilepsy in the Leukodystrophies
Musculoskeletal
Rehabilitation Management: Hypertonia
Pulmonary
Clinical Practice Guidelines Under Development
Workgroups have been established for the following areas and CPGs are currently under development. Access to all guidelines will be available here as they are completed.
Consensus for Cerebrotendinous Xanthomatosis Newborn Screening
Clinical Management of Cerebrotendinous Xanthomatosis
Consensus Guidelines for Infantile Krabbe Disease