The Cerebellar Ataxia & Hereditary Spastic Paraplegias Disease Knowledge Page provides reference information on care of cerebellar ataxia and hereditary spastic paraplegias.
Information and knowledge that has been developed or endorsed by ERN-RND is found in the blue boxes.
Patient Lori shares her patient journey (HSP)
Juliane about her daughter's patient journey (HSP)
Definition
ERN-RND centres for Cerebellar Ataxia & HSPs
Educational webinars
Webinars in regards to Ataxias:
- Cerebellar ataxia, a clinical approach - by Bart van de Warrenburg
- Inherited ataxias - by Paola Giunti
- Non-progressive congenital ataxia - by Alfons Macaya
- Clinical outcome assessments in ataxia - by Thomas Klockgether
- Development of Sara-home: a novel assessment tool for patients with ataxia - by Gessica Vasco and Susanna Summa
- Rehabilitation in ataxia: current evidence and practice - by Ludger Schöls
- Non-invasive stimulation for ataxias - by Bart van de Warrenburg
- MR Biomarkers in Spinocerebellar Ataxias - by Gülin Öz
- Speech as a biomarker in ataxia: What can it tell us and how should we use it? - by Adam Vogel
Webinars in regards to HSP:
- HSP clinical disease course - by Rebecca Schüle
- Environmental modifiers in HSP - by Pauline Lallemant-Dudek
- Gait rehabilitation in people with HSP - by Jorik Nonnekes
- Treatment of spasticity in HSP and leukodystrophies - by Annemieke Buizer
Webinars addressing all subthematic areas:
- Genetic therapies and therapy developments for rare movement disorders by Willeke van Roon-Mom
Care Standards - Clinical Rating Scales
Ataxias:
Scale for the assessment and rating of ataxia (SARA)
Hereditary Spastic Paraplegias:
The Spastic Paraplegias Rating Scale (SPRS)
Scales to measure HSP in children before adolescence
Care Standards - Guidelines
Care Standards - Diagnosis
Ataxias:
Diagnostic flowchart for Adult Ataxias (new version 09/2024)
Diagnostic flowchart for Early-Onset Ataxias
Hereditary Spastic Paraplegias:
Diagnostic flowchart for Hereditary Spastic Paraplegias (HSPs)
Patient Journey
Ataxias:
Patient Journey Friedreich's Ataxia
Hereditary Spastic Paraplegias:
Patient Journey Hereditary Spastic Paraplegias (HSPs)
Information for patients - endorsed by ERN-RND
Ataxia:
General Ataxia leaflet (provided by Ataxia UK):
Muscle tightness & stiffness - 'spasticity' in Ataxia
Friedreich's Ataxia:
Patient information leaflet - FA in 13-17 years old adolescents
Patient information leaflet - FA in 4-12 years old children
Patient organisations
Patient registries to which ERN-RND members contribute
Clinical studies & trials
Patient information
Please note that this section includes useful information from a variety of sources provided by ERN-RND members but which hasn’t been endorsed by ERN-RND.