Registry and Natural History Study for Early Onset Hereditary Spastic Paraplegia

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.

This description comes directly from the study's public registry record.

Darius Ebrahimi-Fakhari, MD, PhD  ·  617-355-6388  ·  hsp.research@childrens.harvard.edu

Nicole Battaglia, BS  ·  hsp.research@childrens.harvard.edu

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