Hereditary Spastic Paraplegia

This page provides information on hereditary spastic paraplegia for which most of it has been endorsed by ERN-RND members. It is structured as follows:

  • Definition
  • ERN-RND centres
  • Diagnosis
  • Care standards
  • Clinical studies & trials
  • Registries
  • Patient organisations
  • Study groups & networks
  • Useful links, training resources, evidence and publications
  • CPMS use case

Definition

According to the HSP Research Foundation, "HSP is a broad group of inherited, degenerative disorders characterised by impaired walking due to spasticity and weakness of the legs. The primary features of HSP are spasticity and weakness with the proportions varying from individual to individual". Please find more information on HSP Research Foundation's website.

ERN-RND centres

We provide the list of hereditary spastic paraplegia centres, members of ERN-RND, as well as the contact details of medical experts.

See all ERN-RND centres

Diagnosis

Care Standards

Clinical studies & Trials

  • Clinical trials at ERN-RND centres
  • International clinical studies & trials
    ClinicalTrials.gov

Registries

  • Registries to which ERN-RND members contribute
    Hereditary spastic paraplegia and spinocerebellar studies
    - SPATAX

Patient organisations

Patient organisations are non-profit organisations which are patient-focused where patients and/or carers represent a majority of members in governing bodies (European Medicines Agency, 2014). Herewith, we provide a list of national and European patient organisations that work in the disease area that is covered by ERN-RND.

See all patient organisations

Study Groups & networks

The listed study groups and disease networks are external networks and groups, which are leaders in the field of research for these disease groups. ERN-RND’s work is based on and complimentary to the work being done by these networks.

See all study groups and networks

Useful links, training resources, evidence and publications

CPMS use case

We organise e-case meetings on hereditary spastic paraplegia in order to train young neurologists and support cohort formation.

Find out more about the CPMS here