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SP-CERN The Spastic Paraplegia – Centers for Excellence Research Network

Investigators dedicated to researching Hereditary Spastic Paraplegia (HSP) and Primary Lateral Sclerosis (PLS) from around the United States have come together to create critical resources for the HSP and PLS community. The SP-CERN (Spastic Paraplegia Centers of Excellence Research Network) establishes a network of ten initial centers in North America. These centers bring together established physician-scientists and their multidisciplinary teams. SP-CERN will support the development of a registry and natural history study across all ages, a biobank for research biospecimens, and a genomic archive. These efforts will lay the groundwork for numerous opportunities to improve diagnosis and clinical trial readiness. Our objective is to harmonize this effort with similar consortia in Canada, Europe, Asia, South America, and Africa, to accelerate basic and clinical research on HSP and PLS globally. SP-CERN will provide critical research infrastructure for collaborative, high-quality research on HSP and PLS in North America and beyond.

The Spastic Paraplegia – Centers for Excellence Research Network (SP-CERN) is the first Spastic Paraplegia Research Consortium in the United States

The goal of the SP-CERN is to create clinical trial readiness, support therapy development, and increase access to high-quality healthcare for individuals with hereditary spastic paraplegia (HSP) and primary lateral sclerosis (PLS). Physician-scientists and their multi-disciplinary teams from ten different research centers across the United States will collaborate to develop a framework for translational research for HSP that will ultimately improve the lives of children and adults affected by HSP and PLS.


Principal Investigator
  • Darius Ebrahimi-Fakhari, MD, PhD
    Darius Ebrahimi-Fakhari, MD, PhD

    Boston Children’s Hospital
    Director, Movement Disorders Program; Attending, Department of Neurology
    Assistant Professor of Neurology, Harvard Medical School

  • Stephan Züchner MD, PhD
    Stephan Züchner MD, PhD

    University of Miami
    Professor for Human Genetics and Neurology
    Chief Genomics Officer, Leonard M. Miller School of Medicine

  • Mario Saporta MD, PhD
    Mario Saporta MD, PhD

    University of Miami
    Associate Professor of Clinical Neurology
    Director, Muscular Dystrophy Association Care Center
    Director, Charcot-Marie-Tooth Center of Excellence

  • Craig Blackstone, MD, PhD
    Craig Blackstone, MD, PhD

    Massachusetts General Hospital
    Chief, Movement Disorders Division; Massachusetts General Hospital and Harvard Medical School

  • Daniel Calame, MD, PhD
    Daniel Calame, MD, PhD

    Texas Children’s Hospital
    Assistant Professor of Pediatric Neurology and Developmental Neurosciences
    Baylor College of Medicine

  • Matthew Harms, MD
    Matthew Harms, MD

    Columbia University Irving Medical Center
    Associate Professor of Neurology; NewYork-Presbyterian / Columbia University Irving Medical Center
    Clinical Neurophysiology, Neurology, Neuromuscular Medicine

  • John Fink, MD
    John Fink, MD

    University of Michigan
    Professor in the Department of Neurology
    Director of the Neurogenetic Disorders Program; University of Michigan Medical School

  • Michelle Christie, MD
    Michelle Christie, MD

    Scottish Rite for Children
    Medical Director of Neurology & Rehabilitation Medicine
    Director of Neurophysiology; Scottish Rite for Children

  • Michael Shy, MD
    Michael Shy, MD

    University of Iowa
    Director, Division of Neuromuscular Medicine, Neurology; University of Iowa Health Care
    Professor of Neurology, Pediatrics, & Molecular Physiology and Biophysics; Carver College of Medicine

  • University of Washington: Marie Davis, MD, PhD
    University of Washington: Marie Davis, MD, PhD

    University of Washington
    Board certified neurologist; UW Medicine-University of Washington Medical Center
    Assistant professor in the Department of Neurology; UW School of Medicine

  •  Donald Gilbert, MD
    Donald Gilbert, MD

    Cincinnati Children’s Hospital Medical Center: Donald Gilbert, MD
    Pediatric Movement Disorders and Tourette Syndrome Specialist, Division of Neurology
    Professor, UC Department of Pediatrics

Genetic Sequencing Initiative

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Our Impact since our inception...

  • Dollars Raised

    Over 12,000,000 dollars for research!

Thank you to our generous sponsors.