International registry tracking lung and genetic tumor conditions in children

This is an international registry — a centralized database — that collects medical information from patients with pleuropulmonary blastoma (a rare lung cancer in young children) and other cancers linked to changes in the DICER1 gene. By sharing your medical history, imaging results, and treatment details, you help researchers worldwide better understand these rare conditions and improve care for future patients.

These rare cancers are so uncommon that no single hospital sees enough patients to fully understand how to treat them best. By gathering information from patients across many countries, researchers can identify patterns, learn what treatments work, and develop better guidelines for doctors caring for children with these conditions.