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MRC Prion Unit
From fundamental research to prevention and cure

Statutory organisations

All those with suspected prion disease are referred simultaneously to the National Prion Clinic (NPC) and the National CJD Surveillance Unit (NCJDSU) order to ensure families receive a prompt service and access to information about treatments at the earliest opportunity. Staff from the NPC and researchers from the NCJDSU will arrange to visit you and your family either at home or in hospital. They will liaise with the doctors involved in your or your relatives care, and if any form of prion disease is felt to be likely or is confirmed, a plan for further management will be agreed with you.

National Prion Clinic
National Hospital for Neurology and Neurosurgery
Queen Square

Tel: 020 3448 4037 / 020 3448 4038
Fax: 020 3448 4046

The National Prion Clinic at the National Hospital for Neurology and Neurosurgery is the national referral centre for people with suspected or confirmed prion disease. Assessment, diagnosis, information, advice and support are available for patients, families, and health care professionals, and we are happy to discuss any issues with families or professionals over the telephone, without the prior need for a referral.
In our role as the tertiary referral centre for prion disease in the UK, the neurologists, nurses and counsellor offer clinical support and liase closely with local care teams and the Care Co-ordinator who administrates the National Care Package.

National Creutzfeldt-Jakob Disease Surveillance Unit
Western General Hospital
Crewe Road
Edinburgh, EH4 2XU
Tel: 0131 537 2128
Care Office: 0131 537 3073
Website: www.cjd.ed.ac.uk

The NCJDSU is based in Edinburgh, and its role is to monitor all suspected cases of prion disease in order to develop an understanding of the factors potentially associated with the development of these diseases.

A Care Co-ordinator based at the CJD Surveillance Unit in Edinburgh is also available to help facilitate the development of a care package that is flexible, can 'fast track services', and meets the individual needs of the family concerned. Department of Health funding to meet any shortfalls in provision due to a restriction in resources locally is administrated by the Care Co-ordinator. This funding is known as the National Care Package.

Growth Hormone related queries

A service specifically for recipients of human derived pituitary growth hormone has been established at the Institute of Child Health. Please contact:

Leah Davidson
Institute of Child Health
30 Guilford Street
London WC1N 1EH
Tel: 020 7404 0536
Email: L.Davidson@ich.ucl.ac.uk

Leah Davidson coordinates care for people affected by growth hormone related iatrogenic CJD.