Creutzfeldt-Jakob Disease: Statistics (Hansard, 5 May 1998)

§ Lord McIntosh of Haringey

The information requested falls within the responsibility of the Chief Executive of the Office for National Statistics, who has been asked to arrange for a reply to be given.

Letter to Lord Avebury from the Chief Executive of the Office for National Statistics, dated 5 May 1998.

As Director of the Office for National Statistics (ONS), I have been asked to reply to your parliamentary question on what date the Office of Population Censuses and Surveys Vital Statistics Branch first started to monitor Creutzfeldt-Jakob Disease.

The Office for National Statistics (ONS) has a responsibility to monitor the health of the population of England and Wales. As part of this responsibility, the ONS publishes annual mortality statistics, including statistics on deaths from CJD. In addition to publication of these routine mortality statistics, the ONS has expanded its work in the area of deaths from CJD and other dementing illnesses.

However, the lead role in monitoring the epidemiology of Creutzfeldt-Jakob (CJD) disease is taken by the National CJD Surveillance Unit. The National CJD Surveillance Unit is based in Edinburgh and was set up in May 1990, and is funded by the Department of Health and the Scottish Office. Copies of death certificates that mention CJD are automatically sent by the ONS to the National CJD Surveillance Unit, so that these cases can be investigated further.

Since CJD can be difficult to diagnose, it is possible that some people who have died from CJD may have been certified as dying from another dementing illness. For this reason, ONS is monitoring death rates from 1979 onwards for a number of dementing illnesses and neurodegenerative disorders. The objective is to identify at an early stage any evidence of an increase in deaths from these diseases.

The ONS is collaborating with the National CJD Surveillance Unit to identify cases of CJD that may have been missed in people dying between 1979 and 1996. All people aged 15–44 years who died from a dementing illness in England during this period have been identified from ONS records. Research officers from the 63WA ONS are currently visiting hospitals to examine the clinical records of these patients to determine if they may have died from CJD. Any suspected cases will be referred to the National CJD Surveillance Unit for further investigation and final classification of the cause of death.

There are a number of ONS publications on CJD and dementia. These are as follows:

Aylin P., Rooney C., Dreyer F., Coleman M.

Increasing mortality from Creutzfeldt-Jakob disease in England and Wales since 1979; ascertainment bias from increase in post-mortems? Population Trends 1996; 85: 34–8.

Majeed A., Lehmann P., Kirby L., Coleman M.

Death rates from dementias and neurodegenerative disorders: did they increase after the population was exposed to BSE? British Medical Journal 1998 (in press).

Kirby L., Lehmann P., Majeed A.

Death rates from dementias and neurodegenerative disorders in people aged 65 years and over in England and Wales, 1979 to 1996. Population Trends 1998 (in press).