THE number of people with a diagnosis of Huntington’s disease in Northern Scotland has increased by almost 50% over the last 30 years according to a new study.
The region has rates of Huntington’s disease (HD) that are among the highest in the world.
The Aberdeen University study, published in the Journal of Neurology, found the number of people in the NHS Grampian region who have the faulty gene that causes HD and also have noticeable symptoms has increased by 46% since 1984.
Across the north of Scotland, 14.6 per 100,000 people have a diagnosis of HD and also have noticeable symptoms. The figure 36 years ago was 9.94 per 100,000.
The prevalence in northern Scotland is almost three times greater than that reported elsewhere in Europe, North America, and Australia (5.70 per 100,000 people) and more than five times the estimated worldwide prevalence of 2.71 per 100,000 people.
Since the identification of the Huntington’s gene in 1993, awareness of HD has increased and more people have come forward for testing to see if they carry the gene.
In the north of Scotland, even just over the last four years, 23% more people without symptoms have had a genetic test to see if they will develop the condition – possibly because of the hope of taking part in trials that might slow down the disease.
The rates of the condition also vary between the different health board regions in the north of Scotland, with more cases in Highland and fewer in the Northern Isles compared with Grampian.
The study team believes the high rates of diagnosis of HD are due to the combination of underlying genetic susceptibility increased awareness of the benefits of diagnosis in affected families and medical practitioners, and the region having one of the oldest specialist HD research clinics in the world. Professor Zosia Miedzybrodzka from the University of Aberdeen, and the consultant in charge of the NHS Grampian’s North of Scotland Huntington’s clinics, led the study.
She said: “Even in a country the size of Scotland, there is quite a variation in prevalence between different health board regions. This difference could have major drug cost and service delivery implications, especially if expensive, complexly - administered therapies prove successful. Health services should gather accurate population-based data on a regional basis to help inform service planning.”
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