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Spastic Paraplegia - Centers of Excellence Research Network
Spastic Paraplegia - Centers of Excellence Research Network (SP-CERN) - Natural History Study Pilot
Who can join
All ages · All sexes
Full eligibility criteria
Inclusion Criteria: * Male or female patients of all ages with a clinical and molecular diagnosis of hereditary spastic paraplegia type 4 (SPG4, SPAST) or hereditary spastic paraplegia type 5A (SPG5A, CYP7B1). Exclusion Criteria: * Not having such a diagnosis and/or not being related to such individual.
About the study
The Spastic Paraplegia - Centers of Excellence Research Network (SP-CERN) is a collaborative research consortium dedicated to advancing the understanding, diagnosis, and treatment of hereditary spastic paraplegia (HSP) and primary lateral sclerosis (PLS). Aims of the consortium are to a) perform natural history studies of HSP subtypes, b) discover and validate biomarkers and clinician- and patient-reported outcome measures, c) uncover HSP's molecular pathophysiology and develop rational therapeutic targets, and d) perform sufficiently powered clinical trials. The current pilot study is aimed at enrolling 100 individuals with hereditary spastic paraplegia type 4 (SPG4) or hereditary spastic paraplegia type 5A (SPG5A).
Sponsor: Boston Children's Hospital · Participants: 100 · Started: Jun 4, 2024
Contact the study team
- Darius Ebrahimi-Fakhari, MD, PhD. · Phone: 617-355-0097
- Nicole Battaglia, BS. · Phone: 617-919-7450
Official record on ClinicalTrials.gov — NCT06553976
Locations in the U.S.
| Florida | University of Miami Miller School of Medicine, Miami (Not yet recruiting) |
| Iowa | University of Iowa Carver College of Medicine, Iowa City (Not yet recruiting) |
| Massachusetts | Boston Children's Hospital, Boston Massachusetts General Hospital, Boston (Not yet recruiting) |
| Michigan | University of Michigan School of Medicine, Ann Arbor (Not yet recruiting) |
| New York | Columbia University - Irving Medical Center, New York (Not yet recruiting) |
| Ohio | Cincinnati Children's Hospital Medical Center, Cincinnati (Not yet recruiting) |
| Texas | Scottish Rite for Children, Dallas (Not yet recruiting) Texas Children's Hospital, Houston (Not yet recruiting) |
| Washington | Seattle Children's Hospital, Seattle (Not yet recruiting) University of Washington School of Medicine, Seattle (Not yet recruiting) |
Conditions
From ClinicalTrials.gov, data retrieved Sep 30, 2026. Each study sets its own eligibility; the study team decides who can join.