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BRITISH NEUROLOGICAL SURVEILLANCE UNIT
  1. Rustam Al–Shahi Salman
  1. University of Edinburgh; on behalf of the Clinical Research and Academic Committee (CRAC) of the Association of British Neurologists

    Abstract

    The British Neurological Surveillance Unit (BNSU) is a longstanding resource to support surveillance for neurological diseases in the UK. Case ascertainment is achieved by monthly emails to ABN members, 50% of whom currently respond.

    In 2012, surveillance stopped for Mitochondrial Disease (37 cases), began for demyelination complicating anti–TNF therapy (seven cases), and continued for Familial Alzheimer's Disease and Familial Frontotemporal Dementia (23 cases), Transient Epileptic Amnesia (23 cases), Severe Hypersensitivity Reactions to Antiepileptic Drugs (15 cases), Drug–induced Liver Injury Reactions to Antiepileptic Drugs (14 cases), Lambert–Eaton Myasthenic Syndrome (11 cases), Myoclonus Dystonia Syndrome (nine cases), Neurological problems occurring within one month of influenza infection in adults (eight cases), and Congenital Cranial Dysinnervation Disorders (six cases). Annual reports indicated that the proportions of responses received from ABN members to questionnaires sent following the notification of a case to BNSU ranged from 50–100%, although these percentages are based on small numbers. Of the 101 patients ascertained by studies submitting annual reports, 30 patients were successfully recruited to the studies.

    The BNSU has the potential to be even more user–friendly, engage more of the ABN membership, and achieve even more than incomplete surveillance of rare neurological diseases. Attendees at the ABN annual meeting are encouraged to visit the posters being displayed by surveillance studies supported by the BNSU, and send any suggestions for improving the BNSU to the ABN office.

    Poster presentations on current BNSU projects will be made during the Thursday ABN poster session. BNSU posters can be found in the section 021–029.

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