The first international patient registry has been launched for primary ciliary dyskinesia (PCD) — a rare lung disease causing long-term and recurring respiratory infections, with no approved treatments and no cure.

PCD is a hereditary condition affecting children and occurs when a child inherits a “faulty” gene from their parent. It affects the cilia – tiny, microscopic moving structures that line the airways, ears and sinuses. Symptoms can include inability to remove mucus from the lungs, persistent blocked nose and sinusitis. It may lead to diffuse bronchiectasis (widening of the bronchi) and eventually to long-term respiratory failure.

To date, 201 patients have been included in the registry.