For years, we have estimated that 1 in 10,000 people have sarcoidosis in the UK. This statistic has been accepted as a broad measure, and can be found in many places online. At the same time, there was an estimate that around 4,000 new cases are diagnosed each year. These numbers have not seemed right for some time, as they would imply that only 5-6,000 people have the disease – clearly this can’t be right given the number of new diagnoses being recorded and the volume of patients we speak to.
Researchers at King’s College London have been looking closely at NHS data and published a detailed report last year in The Lancet that tried to get a more accurate figure of prevalence (how many have it) and incidence (how many are diagnosed).
The data was taken from the UK Clinical Practice Research Datalink, and looked at people over the age of 18 where a sarcoidosis diagnosis was recorded in England and Wales. The researchers then used this data to model realistic trends across the whole of the UK.
The headlines were surprising, and we recommend you read the full report to understand their findings, but the revised estimate is that sarcoidosis affects around 15 people in every 10,000, with diagnoses still running at 3,500 – 4,000 per year.
That puts the UK sarcoidosis population at around 84,000 – but remember that a large percentage of patients have no symptoms and are not being actively treated.
What does this mean?
This doesn’t change how SarcoidosisUK works with its patients and we remain focused on providing the best support through our helpline, social media and support groups. There may be greater need than we realised, and we will continue to grow our services to meet these needs across the UK.
Rare diseases have been poorly served historically by the pharmaceutical industry, where volume drives investment in research. With a larger prevalence, the disease gets more focus, and we are already seeing new drug developments getting into trial phases, and there look to be even more in the pipeline. This new momentum is very encouraging.
We are working closely with the research community through our ongoing Research Innovation Awards and look forward to a successful further round of funding next year.
Full article – https://www.thelancet.com/journals/lanepe/article/PIIS2666-7762(25)00075-4/fulltext