Dystonias, NBIA and Paroxysmal Disorders

The Dystonias, NBIA & Paroxysmal Disorders Disease Knowledge Page provides reference information on care of dystonias, NBIA & paroxysmal disorders.

Information and knowledge that has been developed or endorsed by ERN-RND is found in the blue boxes.

ERN-RND centres for Dystonia, NBIA and Paroxysmal Disorders

Care Standards - Clinical Rating Scales

Dystonia:


Pantothenate Kinase-Associated Neurodegeneration (PKAN):

Care Standards - Guidelines

Blepharospasm, cervical dystonia, adult spasticity and headache:

Practice Guideline update summary - Botulinum neurotoxin treatment


Primary Dystonia:

EFNS guideline


Pantothenate Kinase-Associated Neurodegeneration (PKAN):


Non-PKAN genetic defects:

Care Standards - Diagnosis

Diagnostic flowchart for Dystonia

Diagnostic flowcharts for Paroxysmal Disorders

Care Standards - Therapeutic Algorithms

Therapeutic algorithms for dystonia

Therapeutic algorithm for paroxysmal disorders

Patient Journey

Patient Journey - Cervical Dystonia

A patient journey map for people living with Cervical Dystonia (original paper)

Patient Journey about dystonia here as a flyer

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.

Further useful links, training resources, evidence and publications