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Trust primary ciliary dyskinesia diagnostic team to contribute to key research study 

Primary ciliary dyskinesia team
Primary ciliary dyskinesia team

13 January 2016

Royal Brompton Hospital is one of three primary ciliary dyskinesia (PCD) diagnostic centres in the UK. We have the largest PCD specialist service in Europe, with more than 300 child and adult patients under our care.

In spring 2017, team members Dr Claire Hogg (consultant), Dr Amelia Shoemark (senior clinical scientist) and Emily Frost (respiratory physiologist) will be collaborating in a study led by Professor Jane Lucas from the University of Southampton. Professor Lucas has been successful in securing funding from the National Institute for Health Research (NIHR) Research for Patient Benefit scheme for this study.

PCD is a rare inherited condition where the body cannot remove mucus from the ears, sinuses and lungs due to reduced movement of structures called cilia. Sufferers have frequent infections which may lead to chronic lung infections and loss of hearing if diagnosis is delayed.

Early diagnosis is essential for patients with this illness, which affects babies and young children as well as adults. 

At present, diagnosis takes about three months and involves several tests. Through PCD support groups, patients have expressed the need for more accurate and quicker tests to speed up diagnosis.

The aim of the project is to determine the accuracy of high-speed video microscopy analysis (HSVMA) as a stand-alone test to diagnose PCD. The HSVMA test examines ciliary movement directly and the results are immediately available. By conducting an independent review of video images recorded at UK PCD specialist diagnostic centres, the research team hope to gather the evidence needed to change how the illness is diagnosed and improve care for PCD patients.

Dr Hogg commented: “If HSVMA is found to be sufficiently accurate, this will help meet patients’ need for prompt diagnosis and treatment, and make a significant improvement to their care.”