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

For Families 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 may then authorize their child’s hospital and physicians to give information to the Registry by completing this form: Consent/HIPAA and Information Release Forms New Scientific Study of PPB Causes The International PPB Registry is conducting a major new study of genetic inheritance in PPB patients and their families. We ask that all PPB patients and their families consider participating. A detailed family medical history and a small blood sample are required. Please contact the Registry by phone at 612-813-7115 or by e-mail at gretchen.williams@childrensmn.org for more information. Submit Forms To: The International Pleuropulmonary Blastoma Registry Pediatric Oncology Children’s Hospitals and Clinics of Minnesota 2545 Chicago Ave. S., Suite 412 Minneapolis, MN 55404 Phone: 612-813-7115 Fax: 612-813-7108

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Data and recommendations on this site are conscientiously presented but some are unpublished observations and have not undergone peer review. Consultation with the Registry is encouraged to clarify any topics. The International PPB Registry advises caution in the citation of website information. Minneapolis Web Design by First Scribe.