Treatment of CJD

Creutzfeldt-Jakob disease and other human prion diseases are invariably fatal, and there is currently no proven treatment that has been shown conclusively to slow, halt or reverse the disease process in humans with any form of human prion disease.

The National Care Team

Established by the Department of Health, the National CJD Care Team is based within the NCJDRSU and was formed in order to optimise the care of patients suffering from all forms of CJD. The present team consists of two care coordinators who are senior nurses, with secretarial and clinical neurological support from within the Unit.

When a patient is referred to the NCJDRSU, once a diagnosis of probable or possible CJD is made, if the co-ordinator has not already met the family, the coordinator makes direct contact with the family and offers the opportunity to meet and to assist with care planning. Once contact is made, the coordinator can meet with the patient, family, and the professionals involved in care, on a regular basis, depending on need. The coordinators provide valuable expertise in nursing patients with CJD and can anticipate and prevent some problems that may arise by offering skilled advice and education.

How to Contact The National CJD Care Team

The National Creutzfeldt-Jakob Disease Research & Surveillance Unit
Western General Hospital
Crewe Road
Edinburgh EH4 2XU

Tel: +44 (0)131 537 2128
Fax: +44 (0)131 343 1404
E-mail: national.careteam@ed.ac.uk