Title
European Network for Research on Alternating Hemiplegia of Childhood
Description
The aim is to contribute to the development of a European Registry of children with Alternating Hemiplegia of Childhood (AHC). This is a European Commission funded international study, involving 14 countries with University College London / Great Ormond Street Hospital being the only centre in the UK. Through this project we plan to maximise the current knowledge about AHC i.e. the cause, classifications, the spectrum of disease, and the treatment options, and form specific guidelines for the diagnosis and management of this disorder.
The project team will contact you with further details about the project once notified by you through the BPNSU that you have seen one or more cases. Consent is not required at this stage, for just notifying us that you have had one or more cases under your care.
Lead Clinician
If you require more information please contact Prof Brian GR Neville
Disease name
Alternating Hemiplegia of Childhood
Case Definition
A very rare disorder characterised by early onset, before 18 months of age, of recurrent episodes of hemiplegia, affecting alternatively both sides of the body, occurring with paroxysmal phenomena such as tonic and dystonic attacks, oculomotor, and autonomic disturbances. It is chronically debilitating with deleterious effects on the quality of life of the growing child.
Inclusion Criteria
1. Any patient with a probable or definite diagnosis of Alternating Hemiplegia of Childhood.
2. Living or deceased, under your care.
Exclusion Criteria
1. Any patient without a probable or a definite diagnosis of Alternating Hemiplegia of Childhood