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┬ásinusitis. 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.