The Ataxia Centre brings together a team of specialists, with expertise in the diagnosis, management and research of all forms of ataxia. The centre offers patient centred care for all people living with ataxia.
The service is led by consultant neurologists and is supported by a multidisciplinary team (MDT) comprising of a physiotherapist, specialist nurse, an occupational therapist, and a speech and language therapist. We also have a team of medical researchers and a trial co-ordinator who attend clinics. Our service runs a large number of trials and studies, which you may be invited to participate in.
The Ataxia Centre is the largest of its kind in Europe, and is registered as the UK ‘expert centre’ for ataxias within the European Reference Network for rare neurological diseases (ERN-RND). Prof Paola Giunti is the UK representative on the board of the network.
We are one of only two specialist ataxia centres in the UK accredited by Ataxia UK. To achieve accreditation, centres have to comply with criteria devised following consultation with patients with ataxia and clinicians with an expertise in ataxia, to provide ‘excellence of care for the diagnosis and management of the ataxias, and access to a wide range of integrated services, as well as links to research programmes’.
Representatives from Ataxia UK, the leading national charity in the UK for people affected by any type of ataxia, can be accessed via the clinics to provide information and support for our patients, and have a personal experience of living with ataxia.
National Hospital for Neurology and Neurosurgery
23 Queen Square
London, WC1N 3BG
- Assist in investigating to achieve a deﬁnitive diagnosis
- Perform a comprehensive assessment of individual needs
- Give ongoing therapy, support and advice
- Offer symptom management and treatment advice
- Provide genetic counselling as appropriate
- Provide emotional and psychological support
- Optimise access to community services
- Provide regular assessment and monitoring
- Offer access to current or upcoming research projects
Three types of clinic are currently offered, either as face-to-face or remote appointments where appropriate and according to patient preference:
- Consultant-led general ataxia clinics (PG204/PG203/MP5PG)
- An Interdisciplinary Therapy (IDT) clinic for the assessment and holistic management of patients with therapy requirements
- Nurse-led telephone and face-to-face clinics offering ongoing support and advice between outpatient appointments (PG2T1/PG205)
The consultant-led general ataxia clinics support the investigation and monitoring of ataxia, and where appropriate, genetic counselling.
The Interdisciplinary Therapy clinic comprises the lead clinician specialising in ataxia, an occupational therapist, physiotherapist and speech and language therapist with expertise in adult neurological rehabilitation. The clinic runs fortnightly and provides specialist assessment focussing on the functional impact of ataxia in relation to everyday activities.
The aim of the clinic is to provide a comprehensive assessment of needs, offer specialist advice and optimise access to community services. Depending on patients’ needs and access, they may be referred locally or followed up for therapy at the National Hospital for Neurology and Neurosurgery.
Nurse led telephone clinics may be offered between outpatient appointments for additional support for symptomatic management and advice, information relating to welfare and beneﬁts, and referral to other disciplines or agencies.
We have close links with the Neurogenetics Unit which provides a regional genetics service for inherited neurological diseases and a national and international diagnostic service for rare neurogenetic disorders. The Unit has Clinical Pathology Accreditation (CPA) and is a member of the UK Genetic Testing Network. The staff have many years’ experience in the analysis and interpretation of molecular genetic results. This link with The Ataxia Centre allows the development of new genetic tests.
We also have close links with a number of other specialists at the NHNN with expertise in managing ataxia related symptoms, and have established referral pathways in the following disciplines:
- Sleep Respiratory Medicine
- Orthotic Service
- Dietician Service
- Neurological and spinal surgery
- Audio-vestibular service
- Specialist Spasticity Service
- Vocational Rehabilitation Service
- ENT Service
All forms of ataxia are managed through the clinic, particularly genetic and progressive degenerative causes, including:
- Spinocerebellar ataxias (SCAs)
- Friedreich’s ataxia (FRDA)
- Autosomal recessive spastic ataxia of Charlevoix-Saguenay (ARSACS)
- Ataxia with oculomotor apraxia (AOA)
- Ataxia telangiectasia (ATM)
- Dentatorubropallidoluysian atrophy (DRPLA)
- Multiple system atrophy (MSA-C)
- Idiopathic ataxia (including idiopathic late-onset cerebellar ataxia, ILOCA)
- Autosomal dominant cerebellar ataxia (ADCA) and autosomal recessive cerebellar ataxia (ARCA)
- Paraneoplastic ataxias
- Autoimmune ataxias (including GAD-related ataxia)
- Coeliac ataxia
- Ataxia with vitamin E deﬁciency (AVED)
- Ataxia with co-enzyme Q10 deﬁciency (ACoQ10D)
- Ataxia related to hereditary spastic paraparesis (HSP)
- Ataxia related to mitochondrial disorders
- Ataxia related to metabolic disorders