Neurodegeneration with Brain Iron Accumulation

This page provides information on neurodegeneration with brain iron accumulation 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 NBIA Disorders Association, "Neurodegeneration with Brain Iron Accumulation is a group of rare, genetic neurological disorders characterized by abnormal accumulation of iron in the basal ganglia." Please find more information on the NBIA Disorders Association's website.

ERN-RND centres

Diagnosis

  • ERN-RND approved diagnostic flowcharts

Care Standards

Under construction

Clinical studies & trials

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

Registries

Under construction

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.

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.

Under construction

Useful links, training resources, evidence and publications

Under construction

CPMS use case

We organise e-case meetings on neurodegeneration with brain iron accumulation  in order to discuss unsolved cases after comprehensive genetic testing (including Phenocopies).

Find out more about the CPMS here