Registry for Hereditary Spastic Paraplegia to Support Future Treatments

Is this trial a fit for you?

A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.

What this trial studies

This registry aims to create a comprehensive database of patients affected by hereditary spastic paraplegia (HSP) to facilitate the collection and management of patient data over time. It will involve five clinical centers where participants will be assessed annually, allowing for the monitoring of disease progression and the development of clinical outcome measures. The registry will utilize validated clinical scales, biomarkers, and patient-reported outcomes to capture the phenotypic complexity of HSP. Biological samples will also be collected for future research and analysis.

Why it matters

Who can join: the full rules

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

Where it's running

• IRCCS Fondazione Stella Maris
  Pisa, Italy Recruiting

Study contacts

• Principal investigator: Filippo M Santorelli, Dr. — IRCCS Fondazione Stella Maris
• Study coordinator: Filippo M Santorelli, Dr.
• Email: filippo.santorelli@fsm.unipi.it
• Phone: +39 050886275

Similar studies

Other studies for the same condition or treatment. Recruiting studies are listed first.

• Rare Disease Registry for Movement Disorders in Southern Anhui

  This project is creating a registry to collect information from adults with motor neuron diseases, spinocerebellar ataxias, hereditary muscular dystrophy, or hereditary spastic paraplegia in Southern Anhui.

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• TreatHSP/SPAX: An adaptive natural history platform for SPAX diseases

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• Noninvasive spinal stimulation to improve walking in hereditary spastic paraplegia

  This trial will test whether noninvasive transcutaneous spinal cord stimulation can improve walking and reduce muscle stiffness in adults with hereditary spastic paraplegia.

  Recruiting University of Kentucky · Lexington, Kentucky · NCT07417943

• Wearable monitoring of walking and arm movement in adults with neuromuscular or metabolic movement disorders

  This project uses a wrist/ankle wearable to continuously monitor walking and upper-limb movement in ambulant adults with neuromuscular diseases or obesity to see if digital measures like stride speed track real-life motor function.

  Recruiting Centre Hospitalier Universitaire de Liege · Liège · NCT07136844

• Evaluating surgical treatment for foot deformities in hereditary spastic paraplegia

  This study is testing how well surgery can help people with hereditary spastic paraplegia and foot deformities feel and function better over two years.

  Recruiting Shanghai 6th People's Hospital · Shanghai, Shanghai Municipality · NCT06936163

• Exploring intrathecal baclofen treatment for hereditary spastic paraplegia

  This study is testing if a special pump that delivers baclofen directly into the spine can help people with hereditary spastic paraplegia improve their movement and quality of life better than taking the medication by mouth.

  Recruiting Shanghai 6th People's Hospital · Shanghai, Shanghai Municipality · NCT06844734

How to take part

1. Review the eligibility criteria above with your treating physician.
2. Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
3. Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.