PCD may affect 10-times more than was thought

The orphan status genetic disease, primary ciliary dyskinesia, could affect 10-times more children than was previously thought, according to data from a study presented at the European Respiratory Society conference in Berlin, Germany.

A task force set up by the Society believes PCD may occur in between one in 3,000 and one in 10,000 children in Europe, far exceeding the previous one in 30,000 estimate, after an unprecedented study into the incidence and treatment of the disease in the area.

Surveys filled in by 210 practitioners, covering 1,071 patients in 24 countries, illustrated a startling disparity in care practices. The average age at which the disease was diagnosed was: 5.5 years in western and northern Europe; seven years in southern Europe; and 8.5 years in eastern Europe. 72% of treatment centers provide regularly quarterly check-ups for PCD sufferers, but 4% only offer an annual appointment, whereas 2% see patients only on request.