PPB Registry Treatment and Biology Registry

Families who want to include their child’s information in the PPB Registry should review the For Families page on this website in order to understand the purposes of the Registry and the protection of patient privacy in use of Registry data. The family should then contact the Registry, (612.813.7115 or info@ppbregistry.org) to request Registry consent forms which will authorize their child’s hospital and physicians to give information to the Registry.

New Scientific Study of PPB Causes

The International PPB Registry is conducting a major study of genetic inheritance in PPB patients and their families. We ask that all PPB patients and their families consider participating. Visit http://www.ppbgeneticstudy.org/ or http://dceg.cancer.gov/cgb/research/dicer1-ppb-study for more information.