Sarcoidosis statistics

Sarcoidosis is also known as sarcoid. It is a condition where cells in your body clump together to make small lumps called granulomas. These granulomas can develop in any part of your body, but are most commonly found in the lungs and lymph glands. When lots of granuloas develop in one area, they begin to affect how well that part of your body works, which causes symptoms.

These statistics on sarcoidosis in the UK were compiled as part of our Respiratory Health of the Nation project by teams at St George’s University of London, Nottingham University and Imperial College London.

Numbers of people with sarcoidosis

How many people in the UK have been diagnosed with sarcoidosis?

The recorded prevalence rate of sarcoidosis increased by nearly 8% between 2008 and 2012. Around 108,000 people have been diagnosed with sarcoidosis in their lifetime, also known as the lifetime prevalence. According to anecdotal evidence from clinical practice, the figures for recorded lifetime prevalence are credible. However, more research would help us interrogate and understand these figures more thoroughly.

Estimated numbers of people ever diagnosed with sarcoidosis 2004–12

How many people have sarcoidosis in each region of the UK?

The regional analysis of incidence shows that while there is considerable variation in the number of people diagnosed in each region, this was not consistent over time: regions that had higher incidence in one year frequently had average incidence the next and the reverse. Overall, there are no consistent trends that suggest incidence is higher in any particular region.

In contrast to the lack of consistent regional variation in sarcoidosis incidence, there was clear regional variation in sarcoidosis prevalence. This is because people can live for a long time after a diagnosis with sarcoidosis, meaning that very small year-on-year differences in incidence, over many years, add up to more noticeable differences in the total prevalence.

Our data show prevalence rates for sarcoidosis are consistently higher in Northern Ireland, Scotland and London. This is because certain groups, including people from Ireland and of Afro-Caribbean descent, have a genetic predisposition to sarcoidosis. There are many people of Irish descent in Scotland and Northern
Ireland, and many people of Irish and Afro-Caribbean descent in London.

The diagnosis and referral practice for suspected sarcoidosis may also vary across regions, contributing to regional variations. This reflects different levels of expertise and enthusiasm in tertiary referral centres. It can also affect recorded incidence and prevalence data.

Number of people per 100,000 ever diagnosed with sarcoidosis, by UK region, 2004–12

How many people develop sarcoidosis each year in the UK?

The incidence of sarcoidosis has remained stable. Around 4,500 people were diagnosed with the disease in 2012. Annual incidence is 7 cases per 100,000. This is consistent with the range of 5 to 40 per 100,000 reported from other northern European countries. However, it is more than double the figure of 3 per 100,000 cited in the British Thoracic Society’s Interstitial Lung Disease Guideline (BTS 2008). This references a paper presenting data for the 1991-1992 population.

Number of people per 100,000 newly diagnosed with sarcoidosis, each year, 2004–12

How many people developed sarcoidosis in each UK region in 2004–12?

There are no consistent trends that suggest incidence is higher in any particular region.

How many males and females have sarcoidosis in the UK?

There is no significant difference between men and women in prevalence of sarcoidosis.

Number of males and females ever diagnosed with sarcoidosis per 100,000, 2004–12

How many males and females developed sarcoidosis each year in 2004–12?

There is no significant difference between men and women in incidence of sarcoidosis.

Number of males and females per 100,000 newly diagnosed with sarcoidosis each year, 2004–12

Ages of people with sarcoidosis

What age are the people with sarcoidosis in the UK?

Prevalance of sarcoidosis is greatest in people aged 50-80.

Number of people per 100,000 ever diagnosed with sarcoidosis, by age group, 2004–12

How old are the people who get sarcoidosis each year in the UK?

Around three quarters of people diagnosed with sarcoidosis are aged between 30 and 60.

Deaths from sarcoidosis

How many people died from sarcoidosis in the UK in 2012?

In 2012, 170 people died from sarcoidosis (less than 0.1 per cent of all deaths and 0.1 per cent of deaths from lung disease), up from 137 in 2008.

How many males and females died from sarcoidosis in the UK in 2012?

In 2012, of the 170 people who died from sarcoidosis, 83 were males and 87 were females.

What age were the people who died from sarcoidosis in the UK in 2012?

In 2012, of the 170 people who died from sarcoidosis, 76 were aged 15–64 and 94 were aged 65 and above.

How many people died from sarcoidosis in each UK nation in 2008–12?

England: The death rate was higher in London compared with other parts of the UK.

Scotland: The death rate was similar to that of the UK generally.

Wales: The death rate was similar to that of the UK generally.

Northern Ireland: The death rate was higher among females than in the UK generally.

Standard of living and sarcoidosis

Does your standard of living affect your chances of having sarcoidosis in the UK?

Figures for 2004–13 show that the chances of having been diagnosed with sarcoidosis increase the better off you are. This is the opposite of the pattern shown for several other lung diseases, such as COPD and lung cancer.

Number of people per 100,000 ever diagnosed with sarcoidosis, by standard of living, 2004–12

Find out how the standard of living figures were calculated: Methodology - standard of living