Volume 16: Reference Material
3. Statistics
Creutzfeldt-Jakob Disease

3.28 The Department of Health (DH) issues monthly CJD figures, although the statistics themselves are based on referrals to the national CJD Surveillance Unit (CJDSU) in Edinburgh and their subsequent diagnosis. Not all cases referred to the CJDSU turn out to be one of the forms of CJD. For example, in 1997 only half of cases referred were diagnosed as CJD.

3.29 The national surveillance programme for CJD in the UK was initiated in May 1990. The figure below includes data up to 4 September 2000. Variant CJD (vCJD) is the variant of the disease that is directly linked to BSE. From April 2000 the CJDSU added a new column to its monthly table, showing probably cases of vCJD who were still alive. By 4 September 2000 there had been 74 definite and probable deaths from vCJD and eight probable cases were still alive.

Figure 3.40: Deaths from Creutzfeldt-Jakob Disease, UK, 1985 to 4 September 2000

3.30 While vCJD is a recent phenomenon, the average number of cases of sporadic CJD identified annually since 1990 is also higher than in previous surveillance periods extending back to 1970. It is impossible to say with certainty to what extent these changes reflect an improvement in case ascertainment and to what extent, if any, changes in incidence.

3.31 The eventual incidence of vCJD may not be known for many years. ¹