Research network for hereditary spastic paraplegia and primary lateral sclerosis

Is this trial a fit for you?

A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.

What this trial studies

The Spastic Paraplegia - Centers of Excellence Research Network (SP-CERN) is a collaborative initiative aimed at enhancing the understanding, diagnosis, and treatment of hereditary spastic paraplegia (HSP) and primary lateral sclerosis (PLS). This observational study focuses on enrolling individuals diagnosed with hereditary spastic paraplegia type 4 (SPG4) or type 5A (SPG5A) to perform natural history studies, discover biomarkers, and develop therapeutic targets. The consortium also aims to harmonize efforts with similar international consortia to accelerate research on these conditions globally.

Why it matters

Who can join: the full rules

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.

Where it's running

• Boston Children's Hospital
  Boston, Massachusetts, United States Recruiting
• University of Miami Miller School of Medicine
  Miami, Florida, United States Not yet recruiting
• University of Iowa Carver College of Medicine
  Iowa City, Iowa, United States Not yet recruiting
• Massachusetts General Hospital
  Boston, Massachusetts, United States Not yet recruiting
• University of Michigan School of Medicine
  Ann Arbor, Michigan, United States Not yet recruiting
• Columbia University - Irving Medical Center
  New York, New York, United States Not yet recruiting

Study contacts

• Study coordinator: Darius Ebrahimi-Fakhari, MD, PhD.
• Email: hsp.research@childrens.harvard.edu
• Phone: 617-355-0097

Similar studies

Other studies for the same condition or treatment. Recruiting studies are listed first.

• Registry for Early Onset Hereditary Spastic Paraplegia

  This study is collecting information and samples from people under 30 with early onset hereditary spastic paraplegia to help understand the condition better and find new treatments.

  Recruiting Boston Children's Hospital · Boston, Massachusetts · NCT04712812

• Wearable monitoring of walking and arm movement in adults with neuromuscular or metabolic movement disorders

  This project uses a wrist/ankle wearable to continuously monitor walking and upper-limb movement in ambulant adults with neuromuscular diseases or obesity to see if digital measures like stride speed track real-life motor function.

  Recruiting Centre Hospitalier Universitaire de Liege · Liège · NCT07136844

• Rare Disease Registry for Movement Disorders in Southern Anhui

  This project is creating a registry to collect information from adults with motor neuron diseases, spinocerebellar ataxias, hereditary muscular dystrophy, or hereditary spastic paraplegia in Southern Anhui.

  Recruiting First Affiliated Hospital of Wannan Medical College · Wuhu, Anhui · NCT07838883

• TreatHSP/SPAX: An adaptive natural history platform for SPAX diseases

  This study tests a shared, long-term framework to track how SPAX diseases progress and to develop useful patient-centered outcome measures and biomarkers.

  Recruiting at 30 sites Heidelberg University · Innsbruck and 29 other locations · NCT07798674

• Noninvasive spinal stimulation to improve walking in hereditary spastic paraplegia

  This trial will test whether noninvasive transcutaneous spinal cord stimulation can improve walking and reduce muscle stiffness in adults with hereditary spastic paraplegia.

  Recruiting University of Kentucky · Lexington, Kentucky · NCT07417943

• Evaluating surgical treatment for foot deformities in hereditary spastic paraplegia

  This study is testing how well surgery can help people with hereditary spastic paraplegia and foot deformities feel and function better over two years.

  Recruiting Shanghai 6th People's Hospital · Shanghai, Shanghai Municipality · NCT06936163

How to take part

1. Review the eligibility criteria above with your treating physician.
2. Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
3. Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.