The first set of data to come from the European Bronchiectasis Registry suggests that non-cystic fibrosis bronchiectasis is not as rare as we think.
The EMBARC registry was hoping to achieve 1000 patients by April 2016, but at the ERS congress in Amsteredam last month announced that it had smashed its target by reaching 1283 in just 6 months of operation.
At the congress steering committee chair James Chalmers from the University of Dundee in UK presented EMBARC’s first data that showed the most common cause of bronchiectasis was infection (444 [35%] recruited patients) and the most common organism was Pseudomonas aeruginosa (244 [19%] patients),
More than 60% of patients had two or more exacerbations per year and 38% were admitted to hospital every year with severe exacerbations, suggesting a major unmet need for the prevention of exacerbations.
EMBARC’s data also suggested poor adherence to treatment guidelines by physicians. Inhaled corticosteroids were the most frequently used treatment in 624 (49%) patients despite the results of a Cochrane database systematic review suggesting no evidence of benefit.
By contrast, treatments recommended by consensus guidelines including macrolides (151 [12%] patients), inhaled antibiotics (117 [9%] patients), and hypertonic saline (103 [8%] patients) were used in fewer than 15% of patients.
“The first results of the bronchiectasis registry paint a picture of a common disease, with a major impact on patients and the health-care system across the whole of Europe. Patients are suffering frequent exacerbations and struggling with daily symptoms of cough and breathlessness” said Chalmers.
“We don’t have any licensed treatments, but the establishment of the registry is itself a victory, showing that more physicians and health-care organisations than ever before are working together to find better treatments,” he said.
EMBARC has secured funding from a €50 million European initiative under the Innovative Medicines Initiative’s New Drugs for Bad Bugs programme. The registry will run for 5 years. In collaboration with Queen’s University (Belfast, UK), European Cystic Fibrosis Society Clinical Trials Network, and pharmaceutical companies Basilea and Novartis, EMBARC will provide support for the development of two new inhaled antibiotics (tobramycin dry powder for inhalation and a novel molecule BAL30072) and expand to provide much needed epidemiological data for bronchiectasis.