New paper: healthcare for rare movement disorders in Europe

Diagnosis and treatment of rare movement disorders is difficult. To explore the healthcare needs for these patients, a study was performed in all countries of the European Union. This study was set up by the European Reference Network for Rare Neurological Disorders. At Movement Disorders Groningen, Prof. Marina de Koning-Tijssen was part of the team to conduct this investigation.

A survey was sent to experts in the fields of several disorders, such as dystonia, paroxysmal dyskinesias, neurdegeneration with brain iron accumulation, ataxia, hereditairy spastic paraparesis, atypical parkinsonism and chorea.

It turned out that the needs between countries differ greatly. In some countries expressed a need for more teachingcourses, while genetic ests are not readily available in other countries. In terms of management, accept to experts was unequal between countries and access to advanced therapeutic options such as deep brain stimulation or botulinum toxin injection was limited in some countries.

This study establishes the fact that diagnosis and management of rare movement disorders in EU countries is unequal. It shows a clear need for European collaboration to improve the care for patients with rare movement disorders.