Research Network for Hereditary Spastic Paraplegia and Primary Lateral Sclerosis
This is an observational study, meaning it involves collecting information without testing a specific treatment. It's called the Spastic Paraplegia - Centers of Excellence Research Network (SP-CERN). The goal is to better understand hereditary spastic paraplegia (HSP) and primary lateral sclerosis (PLS), which are conditions causing muscle weakness and stiffness. Researchers will create a shared database, a collection of biological samples (biobank), and a genetic data storage. They also aim to improve collaboration between research centers to standardize how information is collected and prepare for future clinical trials. This study plans to enroll 100 people who have a confirmed diagnosis of hereditary spastic paraplegia type 4 (SPG4) or type 5A (SPG5A). The success of this study will be measured by establishing these resources and collaborations within two years.
- Study design
- This is an observational study that aims to enroll 100 participants. It is not testing a specific intervention but rather collecting data to understand conditions better.
- What's involved
- Not specified in the trial record.
- Compensation
- Not stated in the trial record.
- Follow-up
- The primary goals of this study are measured at 2 years, focusing on establishing research infrastructure and collaborations.
AI-generated from the public study record. Only the study team can confirm whether you're eligible — confirm details with them before making decisions.
Spastic Paraplegia - Centers of Excellence Research Network
At a glance
Conditions
NCT06553976
Where you'd take part
This study runs at 11 sites. They're the same protocol — you choose where, and that choice sets who your contact draft is addressed to.
Boston Children's Hospital
Boston, Massachusettsstudy coordinator listed
Recruiting
Cincinnati Children's Hospital Medical Center
Cincinnati, Ohiostudy coordinator listed
Not yet recruiting
Massachusetts General Hospital
Boston, Massachusettsstudy coordinator listed
Not yet recruiting
Scottish Rite for Children
Dallas, Texasstudy coordinator listed
Not yet recruiting
Seattle Children's Hospital
Seattle, Washingtonstudy coordinator listed
Not yet recruiting
Texas Children's Hospital
Houston, Texasstudy coordinator listed
Not yet recruiting
University of Iowa Carver College of Medicine
Iowa City, Iowastudy coordinator listed
Not yet recruiting
University of Miami Miller School of Medicine
Miami, Floridastudy coordinator listed
Not yet recruiting
Sites open and close at different times, so the status above is per site — it can differ from the study's overall status.
Who to contact
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Inclusion
Exclusion
What this trial measures
- Establish a shared clinical database, biobank of biospecimen samples, and a central repository for the storage of all genetic data in SP-CERN.2 years
- Synchronize collaborations between institutions and clinical sites through a central research protocol to standardize outcome measures and maximize the quality of research and data to ensure clinical trial readiness by regulatory standards.2 years
- Test key elements in pilot projects2 years
- Build comprehensive programs for advancements in diagnosis, provide more opportunities for innovative treatments, and increase access to high-quality healthcare for HSP and PLS patients.2 years