Registry Study to Understand Early Onset Hereditary Spastic Paraplegia in Patients Under 30

What this Trial Is About

Researchers are collecting long-term clinical data and biological samples from male and female patients under 30 who have early onset hereditary spastic paraplegia HSP. This neurodegenerative disorder causes progressive neurological decline and is the most common inherited cause of spasticity and disability. The study aims to better understand the diseases causes, clinical course, diagnosis, and treatment to support future research. Participants include those diagnosed clinically and genetically with HSP as well as their family members. The study involves building a registry and natural history database that documents clinical, imaging, and molecular features. Biological samples like blood, skin, and saliva will be collected to create a biorepository for molecular and cellular research. The registry and samples will be securely stored and shared with approved investigators worldwide. During participation, clinical and patient-reported outcome measures are collected over about one year to track disease progression. Researchers will use this data to define the disease spectrum, natural history, and meaningful endpoints for future trials. The study also supports early diagnosis, family counseling, and ongoing re-contact for research purposes. Participant involvement includes providing samples, clinical data, and follow-up information to help advance understanding of early onset HSP.

Registry and Natural History Study for Early Onset Hereditary Spastic Paraplegia