Abstract
Epidemiological studies of systemic amyloidosis are scarce and the burden of disease in England has not previously been estimated. In 1999, the National Health Service commissioned the National Amyloidosis Centre (NAC) to provide a national clinical service for all patients with amyloidosis. Data for all individuals referred to the NAC is held on a comprehensive central database, and these were compared with English death certificate data for amyloidosis from 2000 to 2008, obtained from the Office of National Statistics. Amyloidosis was stated on death certificates of 2543 individuals, representing 0·58/1000 recorded deaths. During the same period, 1143 amyloidosis patients followed at the NAC died, 903 (79%) of whom had amyloidosis recorded on their death certificates. The estimated minimum incidence of systemic amyloidosis in the English population in 2008, based on new referrals to the NAC, was 0·4/100 000 population. The incidence peaked at age 60–79 years. Systemic AL amyloidosis was the most common type with an estimated minimum incidence of 0·3/100 000 population. Although there are various limitations to this study, the available data suggest the incidence of systemic amyloidosis in England exceeds 0·8/100 000 of the population.
Highlights
SummaryEpidemiological studies of systemic amyloidosis are scarce and the burden of disease in England has not previously been estimated
All English residents diagnosed to have systemic amyloidosis between 2000 and 2008 whose details were held on the National Amyloidosis Centre (NAC) databases were identified and their details were provided to ONS
Of the 240 individuals with systemic amyloidosis who were followed at the NAC but did not have amyloidosis stated on their death certificate, 179 (75%) had primary causes of death which were probably related to their amyloid
Summary
Epidemiological studies of systemic amyloidosis are scarce and the burden of disease in England has not previously been estimated. There are almost no published epidemiological studies of amyloidosis in the medical literature; the most comprehensive having been a study conducted at the Mayo Clinic of the general population residing in the surrounding area of Olmstead County, USA (Kyle et al, 1992) They reported an incidence of AL amyloidosis of 5Á1–12Á8 per million person-years, using data from a centralized system recording virtually all medical, surgical and pathological diagnoses of the county residents. We estimate here the incidence of amyloidosis in England based on an analysis of two data sets: reported death certification from the Office of National Statistics (ONS) and information on referrals and deaths held on the NAC database
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