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.

As of 31st December 2022, after nearly 26 years of surveillance, 5095 patients with suspected PIND had been reported. There have been six cases of vCJD in children aged 15 years or less: four definite and two probable.  Three were reported in 1999, one in 2000 and two in mid-2001.  The youngest UK case of vCJD identified to date was aged 12 at onset.

(External collaborators on this project: Dr C Verity, Mrs E Baker, Ms AM Winstone, Ms P Maunder)