What is the study about?
The goal of the PPB DICER1 Syndrome Study is to improve the care of individuals with PPB and other [glossary term:] tumors associated with changes in the DICER1 gene. Specifically, the study seeks to:
- Identify the kinds of tumors and risks associated with DICER1 [glossary term:] mutations
- Determine what leads some individuals with a change in the DICER1 gene to develop a tumor while others with the change remain healthy
- Develop evidence-based guidelines for cancer screening and clinical management of individuals with PPB or other related tumors and/or a change in the DICER1 gene and their families.
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