Pleuropulmonary blastoma (PPB) is a rare [glossary term:] tumor of the lung. Research has shown that PPB may be part of an inherited cancer predisposition [glossary term:] syndrome caused by changes in a [glossary term:] gene known as DICER1.
The PPB DICER1 Syndrome Study is an observational study of individuals with PPB and/or other DICER1-related tumors and their families. The study will help researchers define the tumor types and risks associated with the DICER1 syndrome. We also would like to understand why some individuals with a change in DICER1 develop cancer while others remain healthy. Read the study summary on ClinicalTrials.gov.
To carry out this study, the National Cancer Institute’s (NCI) Clinical Genetics Branch (CGB) is partnering with leading research groups, including:
- International Pleuropulmonary Blastoma Registry (also see their Facebook page)
- International Ovarian and Testicular Stromal Tumor Registry
- Department of Pathology at Children's National Medical Center in Washington, D.C.
- St. Louis Children's Hospital, part of Washington University in St. Louis (read an article about their research).
How can I join?
All individuals with PPB or related tumors and conditions and their family members are encouraged to participate.
Phone: 1-800-518-8474 to speak with the referral nurse