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MRC Prion Unit
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How to refer a patient

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 Cohort Study, 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.

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  • CMO referral form [pdf / 335KB] On encountering patients suspected to be suffering from CJD, or a related prion disease, this form should be completed by the local consultant with responsibility for the patient.

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