How to enroll in the registry

Contact us 

The International Pleuropulmonary Blastoma / DICER1 Registry
910 East 26th Street, Suite 40-LLO8
Minneapolis, MN 55404
Fax: 612-813-7108

What is the International Pleuropulmonary Blastoma/DICER1 Registry?

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: 

  1. Define optimal therapy for PPB, Sertoli Leydig cell tumor and other DICER1-related cancers.
  2. Validate testing and surveillance guidelines for children and adults with germline DICER1 variation.
  3. Develop new ways to diagnose and follow children with DICER1-related cancers.
  4. Discover new therapies for DICER1-related cancers. 

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.