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

Launched by IRCCS FONDAZIONE STELLA MARIS · Aug 23, 2024

Keywords

ClinConnect Summary

The STOP-HSP.Net trial is focused on creating a comprehensive registry for people with Hereditary Spastic Paraplegia (HSP), a rare condition that affects movement by causing stiffness and weakness in the legs. This registry will help researchers collect important information about patients over time, which can lead to better understanding of the disease and the development of new treatments. By gathering detailed health information and feedback from patients, the study aims to improve how future clinical trials are designed and measure the effectiveness of new therapies.

To be eligible for this study, participants should have a clinical diagnosis of either pure or complex HSP, even if they don’t yet have a genetic diagnosis. This includes patients of all ages and genders. Participants, or their guardians, will need to provide informed consent, meaning they agree to join the study and understand how their data will be used. It’s important to note that individuals with secondary forms of HSP, or other health issues that may complicate their condition, may not be included. Those who join can expect to contribute to important research that could benefit future patients with HSP.

Gender

ALL

Eligibility criteria

• 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