New registry aims to unlock secrets of rare neurological disease
NCT ID NCT06572046
First seen Jun 27, 2026 · Last updated Jun 27, 2026
Summary
This study is creating a detailed registry of 500 people with hereditary spastic paraplegia (HSP), a rare disorder that causes progressive leg stiffness and weakness. Researchers will collect medical history, genetic data, and patient feedback over time to better understand how the disease progresses. The goal is to prepare for future clinical trials and identify new genetic forms of HSP.
This is an AI summary of the original study and may miss details. Read our disclaimer.
Study facts
What this study's own registry entry says, in plain language.
- Participants
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About 500 people
The number the study aims to enrol. It can still change while the study runs.
- Started
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Jan 2024
- Expected to finish
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Dec 2029
An estimate. End dates often move.
- Lead sponsor
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Other sponsor
The registry's catch-all category, for sponsors it does not file as a company, a government agency, or a research network.
Who can take part
This study's own entry requirements. Only the study team can say for certain whether you qualify.
Who is studied
Subjects affected by HSP both with a known genetic diagnosis and in the absence of genotypic characterization
- Ages
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Children (under 18), adults (18 to 64) and older adults (65 and over)
- Sex
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Anyone
- Healthy volunteers
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Not accepted
This study is not open to healthy volunteers. The entry requirements below say who it is open to.
Show the full entry requirements Hide the full entry requirements
Copied word for word from the study's registry entry, so the wording is the study team's rather than ours.
Inclusion Criteria: * clinical diagnosis of pure or complex HSP/spastic ataxia, even in the absence of a known genetic diagnosis * participants/parents/legal guardians will have to give informed consent for enrollment in the registry and privacy data management Exclusion Criteria: * subjects affected by secondary forms of HSP * presenting comorbidities that affect the general clinical picture according to clinical judgment * lack of informed consent
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Conditions
The condition(s) this trial relates to.
As listed by the trial registrant
The condition terms exactly as the trial's registrant entered them.
How to take part
Only the study team decides who joins. These are the ways to reach them.
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The places running it
1 site. The list below names each one and where it is.
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The official record
ClinicalTrials.gov lists the study team's own contact details, including names and phone numbers. We don't republish those.
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A doctor treating you
A doctor who knows your case can contact a study site on your behalf, and can tell you whether this study is worth pursuing at all.
Contacts and locations
Locations
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IRCCS Fondazione Stella Maris
RECRUITINGPisa, 56128, Italy
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