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Our Consortium

The Spastic Paraplegia Centers of Excellence Research Network (SP-CERN) unites clinical and research centers across North America, each led by physician-scientists and their multidisciplinary teams. As the first spastic paraplegia research consortium in the United States, these centers are building the foundation for transformative progress in hereditary spastic paraplegia (HSP) through coordinated, high-impact research initiatives that include:

  • A comprehensive registry and natural history study spanning the entire age spectrum
  • A biobank of patient-derived biospecimens to power discovery and mechanistic insight
  • A genomic data archive to advance precision medicine approaches
  • Digital tools and biomarkers to accelerate clinical trial readiness

This shared infrastructure supports not only today’s research but also the therapies of tomorrow by establishing standardized outcome measures, training the next generation of clinician-scientists, and seeding innovative pilot studies. SP-CERN is committed to harmonizing efforts with international consortia to foster a truly global community dedicated to improving diagnosis, treatment, and care for individuals and families affected by HSP.

These intertwined efforts reinforce each other: building infrastructure, training future leaders, fostering innovation, and delivering tools that directly support therapeutic development. Beyond research, SP-CERN works closely with international partners and patient advocacy groups to harmonize protocols, share resources, and strengthen the rare disease community.

By integrating natural history data, genomic resources, digital biomarkers, and clinical expertise, SP-CERN is creating a comprehensive platform that will enable meaningful advances in the care and treatment of individuals with hereditary spastic paraplegia.

SP-CERN is structured around three central Core Units:

  • Administrative Core: Ensures efficiency and coordination across all sites and committees, strengthens international collaboration, advances diversity and inclusion in research, and facilitates clinical trial partnerships
  • Career Enhancement Core: Provides training fellowships and mentorship to cultivate the next generation of clinician-scientists and trial leaders in HSP research
  • Pilot/Feasibility Core: Funds innovative short-term projects that respond rapidly to new opportunities in genomics, biomarkers, and therapeutic development

SP-CERN advances three major Clinical Research Projects:

  1. Clinical Trial Readiness Platform: Builds comprehensive natural history studies across the age span, defines clinical and patient-reported outcome measures, and identifies biomarkers such as neurofilament light chain to prepare for gene-based and other disease-modifying therapies
  2. Genomic Resources and Studies: Expands genetic discovery efforts through state-of-the-art long-read sequencing, bioinformatics, and multi-omics approaches to solve unsolved HSP cases and refine variant classification, laying the groundwork for precision therapies
  3. Digital Surrogates for Disease Progression: Develops wearable sensor technologies and AI-based gait and activity measures as novel endpoints to capture real-world function and accelerate clinical trials