Improving care for people with BHD in the Netherlands

Our knowledge of the main features of BHD (skin, lungs, kidneys) has increased over the years. However, many aspects of BHD, are not understood and it is also likely to be underdiagnosed. This means people with BHD are not having their kidneys screened for early detection of cancer.  We are funding a project that aims to further understand the risks of cancer in BHD and to raise awareness of BHD among other doctors.  

The research team will explore if there is a risk of other cancers in BHD.  They will compare the cases of all types of cancer in people with BHD, their family members without BHD and data from the national Dutch cancer statistics.

Their work will give rise to a Dutch website for people with BHD. It will provide information on BHD and where to find doctors. It will also include ongoing research projects and opportunities to take part in research. The research team will also design an information leaflet about BHD. It will be distributed among all Dutch dermatologists (skin doctors), pulmonologists (lung doctors) and urologists (kidney surgeons) who are most likely to encounter patients with the symptoms of BHD. They hope that this will lead to an increase in early diagnosis of BHD.  

The aim of the proposed project is to further define potential risks for other malignancies in addition to renal cancer in patients with Birt-Hogg-Dubé Syndrome - Dr Arjan Houweling