Behcet’s Syndrome in the UK
Research type
Research Study
Full title
Behcet’s Syndrome in the UK: Organ System Involvement, Comorbidities, Impact on Work and Quality of Life
IRAS ID
198144
Contact name
Nicola Goodson
Contact email
Sponsor organisation
University of Liverpool
Duration of Study in the UK
2 years, 0 months, 1 days
Research summary
Behcet’s Syndrome (BS) is a rare, poorly understood disease affecting small and medium sized blood vessels and most frequently affects young adults aged 20-40 years. It is most common along the ancient ’Silk Routes’ such as Turkey and Iran, although it can occur in any nationality or race and there is evidence of geographical variation of the syndrome. There is no published research describing the characteristics of BS, such as organ system involvement, in the UK. The impact of BS on employment status has been assessed in London involving 70 BS patients, which showed that 46% were not currently working of whom 81% were working before their diagnosis. However, the impact of BS on work productivity and performing daily activities has not yet been explored. It is well recognised BS has significant impact on quality of life. \nThere are three BS Centres of Excellence in England: Liverpool, Birmingham and London. Using the 250 patients registered at the Liverpool BS Centre we wish to:\n\n1)describe the characteristics of BS and outline the prevalence of common comorbidities in this patient group. \n\n2) to determine whether there are clusters of disease characteristics, within the UK BS cohort, which are more likely to occur together.\n \n3) to expand on work relating to BS and employment in the UK by assessing the effect of disease activity on work productivity, daily activities and quality of life.\n\n4)to identify whether the UK BS disease subtypes have different impacts on work outcomes\n
REC name
North West - Liverpool Central Research Ethics Committee
REC reference
16/NW/0854
Date of REC Opinion
24 Nov 2016
REC opinion
Favourable Opinion