Spastic Paraplegia – Centers of Excellence Research Network

The Spastic Paraplegia - Centers of 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, and South America 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.

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Baseline & Follow-Up Assessment Schedule of Events

Baseline Assessment: This initial assessment helps establish a comprehensive understanding of your medical history, symptoms, and functional abilities.

Yearly Follow-Up Assessment: This annual assessment evaluates any changes in your medical history, symptoms, and functional abilities over the past year. It helps track disease progression, treatment effectiveness, and overall health status to ensure personalized and proactive care.

Baseline & Follow-Up Assessments: In-Person Only

Welcome & Introduction (15 minutes)

  • Introductions: Study team, participant, and caregiver (if applicable)
  • Meet with the study coordinator
  • Review of the Informed Consent Form
  • Overview of study participation and visit expectations

Clinical & Medical History (30 minutes)

  • Eligibility Screening
  • Demographics
  • Concomitant Medications
  • Medical History
  • Treatment History

Standardized Clinical Questionnaires (1 hour)

  • SP-CERN Natural History Study Questionnaire
  • Physical & Functional Assessments 
    • Spastic Paraplegia Rating Scale (SPRS)
    • Modified Spastic Paraplegia Rating Scale
    • 10-Meter Walk Test (if applicable) 
    • Two-Minute Walk Test (if applicable) 
    • Five-Stage Functional Mobility Scale
    • SPATAX Disability Scale
    • Modified Ashworth Scale
    • Edinburgh Cognitive and Behavioral ALS Screen
    • Clinical Global Impression (CGI)

Research Updates, Wrap-Up & Next Steps (15 minutes)

  • Research-specific updates from the study provider
  • Time for questions
  • Review of follow-up visits and next steps

Total Estimated Time: 2 hours 

Patient Reported Outcome Measures

  • Caregiver Priorities & Child Health Index of Life with Disabilities (CPCHILD) for Health-related Quality of Life
  • Friedreich Ataxia Rating Scale – Activities of Daily Living
  • Short Form-36 (SF-36)
  • EuroQol-5D (EQ-5D)
  • Patient/Caregiver-rated Global Impression
  • TreatHSP-QoL

Patients will be provided with an online survey que containing ONLY the questionnaires that are applicable to them from the list below.

Total Estimated Time: 45 – 90 minutes