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The first UK clinical trial of potential therapy for Creutzfeldt-Jakob Disease (CJD) is expected to begin shortly.   We need to ensure a high level of patient referral to the trial whilst maintaining the public health surveillance function, and delivery of the care package for patients with this disease.

The responsibility for care and investigation of individual patients remains with the consultant responsible for that patient in consultation with the general practitioner. Nevertheless, the Department of Health is asking the local consultant neurologist, or consultant in other speciality with responsibility for the patient's care, to report to both the National CJD Surveillance Unit and the National Prion Clinic all suspect cases of CJD and other prion diseases. Both the National CJD Surveillance Unit and the National Prion Clinic are able to provide clinical advice about individual patients.

It is essential that local consultants continue to report patient details, with consent, to the National CJD Surveillance Unit for public health and surveillance purposes.   In addition, consultants will also wish to ensure that the patient and his or her family, carer or independent representative are put in touch with the national care package co-ordinator, based at the National CJD Surveillance Unit, who can facilitate access to local support services.

Simultaneously, local consultants are asked to report patient details, with consent, to the National Prion Clinic, so that patients can be offered the chance to participate in the PRION 1 trial, should the diagnosis be confirmed as probable or definite CJD or another prion disease, and also to participate in related research programmes.  Completed forms should be faxed to the units, contact details are provided in Annex D.  Referring consultants may also wish to utilise the specialist clinical and diagnostic expertise at the National Prion Clinic.

The report to the National CJD Surveillance Unit and the National Prion Clinic should take place on a single form (attached at Annex A) and must be authorised by the patient or their representative.  Patients/families should be provided with a single information leaflet explaining the work of both the National CJD Surveillance Unit and the National Prion Clinic.   A copy, produced jointly by the two units, is at Annex B.

Annex C aims to clarify roles and responsibilities for the reporting, surveillance, diagnosis and care of patients with CJD and other transmissible spongiform encephalopathies, as well as arrangements for public health control measures and research.  Contact details are at Annex D.

• Download Complete letter and annexes (PDF, 331K)