Actively Recruiting
Registry and Natural History Study for Early Onset Hereditary Spastic Paraplegia
Led by Boston Children's Hospital · Updated on 2026-03-18
700
Participants Needed
1
Research Sites
557 weeks
Total Duration
On this page
AI-Summary
What this Trial Is About
The Registry and Natural History Study for Early Onset Hereditary Spastic Paraplegia (HSP) is focused on gathering longitudinal clinical data as well as biological samples (skin and/or blood and/or saliva) from male and female patients, under the age of 30, who exhibited early onset symptoms of HSP with (1) a clinical diagnosis of hereditary spastic paraplegia and (2) the presence of variants in HSP related genes and/or be a relative of a person with such a diagnosis. Currently, the treatment for this disorder is generally symptomatic and available therapies improve quality of life, but are grossly inefficient in slowing the disease progression. Access to the registry information will be limited to the study staff who are responsible for recruitment and maintenance of the registry. We hope that recruitment into the registry for studies will advance knowledge of the causes, clinical course, diagnosis, and treatment of these conditions.
CONDITIONS
Official Title
Registry and Natural History Study for Early Onset Hereditary Spastic Paraplegia
Who Can Participate
Eligibility Criteria
You may qualify if you...
- Onset of hereditary spastic paraplegia symptoms before the age of 18 years
- Under the age of 30 years old
- Must have a genetically confirmed variant in HSP-related genes or be a relative of an individual with a confirmed diagnosis
You will not qualify if you...
- Not having a diagnosis of hereditary spastic paraplegia and/or not being related to an individual with such diagnosis
AI-Screening
AI-Powered Screening
Complete this quick 3-step screening to check your eligibility
Trial Site Locations
Total: 1 location
1
Boston Children's Hospital
Boston, Massachusetts, United States, 02115
Actively Recruiting
Research Team
D
Darius Ebrahimi-Fakhari, MD, PhD
CONTACT
N
Nicole Battaglia, BS
CONTACT
How is the study designed?
Study Type
OBSERVATIONAL
Masking
N/A
Allocation
N/A
Model
N/A
Primary Purpose
N/A
Number of Arms
1
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