The International Pleuropulmonary Blastoma (PPB)/DICER1 Registry (also known as The Registry) was founded in 1987 to better understand a rare lung tumor seen primarily in infants and young children. Using information collected from The Registry, in 2009, Dr. Ashley Hill and registry colleagues identified DICER1 as the key gene involved in the development of PPB and a spectrum of other tumors now referred to as DICER1-related conditions.
The mission of the International PPB/DICER1 Registry is to improve outcomes for children and adults with PPB and other DICER1-related cancers through four strategic pillars:
The Registry was founded at Children’s Minnesota in 1987 in collaboration with Washington University-St. Louis and now collaborates with many institutions worldwide to improve outcomes for these rare tumors.
Since its inception, more than 800 children and adults have enrolled in The Registry from 43 U.S. states, 47 countries and six inhabited continents.
Kris Ann Schultz, MD
Yoav Messenger, MD
The Registry collects medical record information from children and adults with PPB or DICER1-related conditions or DICER1 variation and collates this information for research. The Registry also maintains a biorepository samples which are studied to determine the best treatments for DICER1-related tumors.