Spastic Paraplegia - Centers of Excellence Research Network

Part of paid clinical trials in Miami, Florida.

Sponsor
Boston Children's Hospital
Study ID
NCT06553976
Status
Recruiting
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Conditions

  • Early Onset Hereditary Spastic Paraplegia
  • Hereditary Spastic Paraplegia
  • Neuromuscular Diseases
  • Primary Lateral Sclerosis
  • SPG4
  • SPG5A
  • Spastic Paraplegia 4
  • Spastic Paraplegia 5A
  • Spastic Paraplegia, Hereditary

Eligibility Criteria

Sex
ALL
Age
N/A - N/A
Healthy Volunteers
Not accepted

Study Details

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).

Key Dates

Start date
Jun 4, 2024
Status verified
Mar 2026
Primary completion
Jun 4, 2026
Completion
Jun 4, 2027

Study Design

Enrollment
100 participants (estimated)

Primary Outcome Measure

Establish a shared clinical database, biobank of biospecimen samples, and a central repository for the storage of all genetic data in SP-CERN. [ Time Frame: 2 years ]

Central Contacts

Locations (11)

FacilityCityStateZIPSite coordinators
University of Miami Miller School of MedicineMiamiFlorida33136
Stephan Züchner, MD, PhD.
305-989-7835
Yeisha Arcia, BS.
University of Iowa Carver College of MedicineIowa CityIowa52242
Michael Shy, MD.
319-356-7199
Nicole Kressin, MA.
[email protected]
Boston Children's HospitalBostonMassachusetts02215
Darius Ebrahimi-Fakhari, MD, PhD.
[email protected]
617-355-0097
Nicole Battaglia, BS.
[email protected]
617-919-7450
Massachusetts General HospitalBostonMassachusetts02215
Craig Blackstone, MD, PhD.
866-934-3881
University of Michigan School of MedicineAnn ArborMichigan48109
John Fink, MD.
Columbia University - Irving Medical CenterNew YorkNew York10032
Matthew Harms, MD.
Cincinnati Children's Hospital Medical CenterCincinnatiOhio45229-3039
Donald Gilbert, MD.
513-636-2724
Christi Banks, CIP
[email protected]
Scottish Rite for ChildrenDallasTexas75219
Michelle Christie, MD.
214-559-7830
Linsley Smith, BS.
[email protected]
Texas Children's HospitalHoustonTexas77035
Daniel Calame, MD, PhD.
832-492-4843
Taylor Leonard, BS.
[email protected]
Seattle Children's HospitalSeattleWashington98105
Dararat Mingbunjerdsuk, MD.
206-987-2078
Jacquline Lee-Eng, BS.
[email protected]
University of Washington School of MedicineSeattleWashington98195
Marie Davis, MD, PhD
206-598-4030
Sarah Simon, BS.

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University of Miami Miller School of Medicine· Miami, FLUniversity of Iowa Carver College of Medicine· Iowa City, IABoston Children's Hospital· Boston, MAMassachusetts General Hospital· Boston, MAUniversity of Michigan School of Medicine· Ann Arbor, MIColumbia University - Irving Medical Center· New York, NY

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