Background & Purpose Registry Personnel What is the Registry? What the Registry provides? What the Registry Wants? Enroll Basic Facts about PPB PPB Types: I, II & III Signs and Symptoms Age at Diagnosis / Gender / Laterality Prognosis Metastasis PPB Critical Issues Constitutional / Syndrome & Familial Disease Registry Personnel Radiography Surgery Pathology PPB Types: I, II & III Progression of Type Type I Pathology Diagnosis and Differential Diagnosis Type II & III Pathology Diagnosis and Differential Diagnosis Differentiation from Adult Pulmonary Blastoma Immunohistochemistry Ultrastructural Findings Fine Needle Aspiration Cytology Pathology of Metastases Recommended Path Studies Special Studies/Tumor Cytogenetics Pathology Consultation Recommendations Staging Treatment Lung Cysts Type I Type II and III Recurrences & Metastases Stem Cell Therapy Surveillance Appendix/Data Resources Forms, Schemas, and Roadmaps Consultation Enroll Now Basics of PPB What Causes PPB? Different Types of PPB Treatment Surgery Chemotherapy Radiation Therapy Does PPB Spread? Recurrence/Relapse Family/Genetic Issues Who Should Treat PPB? What Can Families Do? Enroll Now Definitions/Glossary Genetic Study/Tissue Bank For Families For Pathologists For Pediatric Oncologists, Data Managers, and Other Physical Caregivers All Forms Pathology Review and Tissue Submission Forms Parental Authorization Chemotherapy Schemas and Roadmaps

Constitutional & Familial Issues: Genetics of PPB: A Very Rare Disease: Enrolling Patients in the Registry Cerebral Metastases in PPB Genetic Study of PPB PPB Associated with Cystic Nephroma and Other Renal Tumors Type I PPB: Treatment Issues Type II and III THERAPY RECOMMENDATION CHANGE 04/09/2010 2010 PPB FAMILY WEEKEND IN WASHINGTON DC 02/15/2007 THERAPY CHANGE: PPB Types II and III 11/15/2006 PPB, Cystic Nephroma & Small Bowel Polyps 10/01/2005 Genetic Study in PPB - PPB Tissue Bank

10/01/2005 - Genetic Study in PPB - PPB Tissue Bank: The molecular basis of PPB is not known, but it appears to have a strong genetic component. PPB has early onset of disease, occurring primarily in infants and children less than five years of age. It is not unusual for children with PPB to have synchronous or metachronous tumors in the lung or other organs. First- and second-degree relatives of PPB patients also appear to be at increased risk for other pediatric embryonal neoplasms including rhabdomyosarcoma and Wilms tumor and related kidney tumors.(Delahunt et al., 1993; Priest et al., 1996). The goal of this research is to identify the genetic basis of PPB. Identifying the genetic basis of PPB will form the foundation of important future studies that will directly affect the care of children with PPB and also improve our understanding of the biology and pathogenesis of PPB and related childhood tumors. To learn more about the PPB Registry Genetic Study contact the Registry and go to the PPB Genetic Study website www.ppbgeneticstudy.org. We encourage all children with PPB and their families consider participating in this important research effort.

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