STOP-HSP.Net: a Registry for Hereditary Spastic Paraplegia as an Integration Tool for Future Therapeutic Strategies

Recruiting now

Conditions studied: Hereditary Spastic Paraplegia

In brief

Our goal is to create a solid and harmonious disease registry of patient affected by hereditary spastic paraplegia (HSP) that facilitates the collection and management of patients' data over time encouraging the research and the development of future clinical trials. In-depth clinical phenotyping will develop significant clinical outcome measures that can be used in clinical trials and will allow the phenotypic complexity of the disease to be captured with the use of validated clinical scales, biomarkers and so-called patient reported outcomes (PROs).

Key facts

Study ID

NCT06572046

Run by

IRCCS Fondazione Stella Maris

People needed

500

Starts

2024-01-24

Expected to finish

2029-12-31

Last updated by the study team

2026-03-27

Who can join

Age: any. Sex: any. Healthy volunteers: not accepted.

You may qualify if…

• 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

You may not qualify if…

• subjects affected by secondary forms of HSP
• presenting comorbidities that affect the general clinical picture according to clinical judgment
• lack of informed consent

Where it is running

• IRCCS Fondazione Stella Maris — Pisa, Italy (enrolling)

Full record on ClinicalTrials.gov

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