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Study of Progressive Intellectual & Neurological Deterioration (PIND)

The aim of this project is to use the mechanism of the British Paediatric Surveillance Unit to identify all cases of progressive intellectual and neurological deterioration in children in the UK, particularly those with features suggestive of vCJD.  All cases are discussed and allocated to a diagnostic category by an Expert Neurological Advisory Group made up of consultants who have specialised knowledge of paediatric neurology, neurogenetics and metabolic disease, together with representation from the National CJD Research & Surveillance Unit.

Prion Surveillance in Primary Immunodeficiency Patients

Woman looking down a microscope

This study started in 2006, and aimed to find out whether any evidence of prion infection could be found in antibody deficient patients who received certain UK-sourced immunoglobulin products between 1996 & 2000. The products were made from plasma from UK donors and have been infected with a particular type of prion that causes variant Creutzfeldt-Jakob Disease (vCJD).

The 65+ Dementia Study: Enhanced surveillance of Creutzfeldt-Jakob Disease in the older population

The 65+ Dementia Study

The 65+ Dementia Study aims to determine whether there is unrecognised prion disease in the older Lothian population. Around 100 people in the UK are diagnosed with prion disease every year, however we think that more might be infected but their illness may not have been recognised, perhaps because the signs and symptoms are similar to different forms of dementia. This research will use patient assessment, blood samples, brain scans and samples of brain tissue from people in Lothian when they die, to find if prion disease is being missed and why.

The Transfusion Medicine Epidemiology Review (TMER)

Blood bag

The Transfusion Medicine Epidemiology Review (TMER) is a collaborative project between the UK NCJDRSU and the UK Blood Services.  The main purpose is to investigate whether there is any evidence that Creutzfeldt-Jakob disease (CJD) or variant Creutzfeldt-Jakob disease (vCJD) may have been transmitted via the blood supply.