International PPB/DICER1 Registry

Summary

Pleuropulmonary blastoma (PPB) is a rare malignant neoplasm of the lung presenting in early childhood. Type I PPB is a purely cystic lesion, Type II is a partially cystic, partially solid tumor, Type III is a completely solid tumor. Treatment of children with PPB is at the discretion of the treating institution. This study builds off of the 2009 study and will also seek to enroll individuals with DICER1-associated conditions, some of whom may present only with the DICER1 gene mutation, which will help the Registry understand how these tumors and conditions develop, their clinical course and the most effective treatments.

Conditions

• Pleuropulmonary Blastoma
• Sertoli-Leydig Cell Tumor
• DICER1 Syndrome
• Cystic Nephroma
• Wilms Tumor
• Pineoblastoma
• Renal Sarcoma
• Nodular Hyperplasia of Thyroid
• Nasal Chondromesenchymal Hamartoma
• Ciliary Body Medulloepithelioma
• Neuroblastoma
• Pituitary Cancer
• Embryonal Rhabdomyosarcoma
• Ovarian Sarcoma
• Gynandroblastoma
• Thyroid Carcinoma
• Embryonal Rhabdomyosarcoma of Vagina (Diagnosis)
• Embryonal Rhabdomyosarcoma of Uterus (Diagnosis)
• Embryonal Rhabdomyosarcoma of Cervix

Sponsors & Collaborators

• Washington University School of Medicine

  collaborator OTHER

• ResourcePath, LLC

  collaborator UNKNOWN

• University of Cambridge

  collaborator OTHER

• Emory University

  collaborator OTHER

• Dana-Farber Cancer Institute

  collaborator OTHER

• Phoenix Children's Hospital

  collaborator OTHER

• Allina Health System

  collaborator OTHER

• University of California, San Francisco

  collaborator OTHER

• M.D. Anderson Cancer Center

  collaborator OTHER

• UC Davis Children's Hospital

  collaborator UNKNOWN

• KK Women's and Children's Hospital

  collaborator OTHER_GOV

• Louisiana State University Health Sciences Center Shreveport

  collaborator OTHER

• Children's Healthcare of Atlanta

  collaborator OTHER

• Dayton Children's Hospital

  collaborator OTHER

• Akron Children's Hospital

  collaborator OTHER

• Starship Children's Hospital of New Zealand

  collaborator UNKNOWN

• Beijing Children's Hospital

  collaborator OTHER

• Bronson Methodist Hospital

  collaborator UNKNOWN

• Rutgers Cancer Institute of New Jersey

  collaborator OTHER

• Children's Hospital of Los Angeles (CHLA)

  collaborator UNKNOWN

• Children's Hospital of Philadelphia

  collaborator OTHER

• Cincinnati Children's Hospital Medical Center (CCHMC)

  collaborator UNKNOWN

• Connecticut Children's Medical Center

  collaborator OTHER

• Federal Scientific Clinical Centre of Pediatric Hematology, Oncology and Immunology named after Dmitry Rogache

  collaborator OTHER

• Driscoll Children's Hospital

  collaborator OTHER

• Hannover Medical School

  collaborator OTHER

• Jewish General Hospital

  collaborator OTHER

• Kaiser Permanente

  collaborator OTHER

• King Faisal Specialist Hospital & Research Center

  collaborator OTHER

• Kingston Health Sciences Centre

  collaborator OTHER

• Massachusetts General Hospital

  collaborator OTHER

• McGill University Health Centre/Research Institute of the McGill University Health Centre

  collaborator OTHER

• National Institutes of Health (NIH)

  collaborator NIH

• Royal Perth Hospital

  collaborator OTHER

• Princess Margaret Hospital for Children

  collaborator OTHER

• Prisma Health-Upstate

  collaborator OTHER

• Roswell Park Cancer Institute

  collaborator OTHER

• The Hospital for Sick Children (SickKids)

  collaborator UNKNOWN

• St. Jude Children's Research Hospital

  collaborator OTHER

• Huntsman Cancer Institute/ University of Utah

  collaborator UNKNOWN

• University of Virginia

  collaborator OTHER

• UT Southwestern Medical Center

  collaborator UNKNOWN

• Ann & Robert H Lurie Children's Hospital of Chicago

  collaborator OTHER

• Children's Hospitals and Clinics of Minnesota

  lead OTHER

Principal Investigators

• Kris Ann P Schultz, MD · Children's Minnesota

Eligibility

Min Age

0 Minutes

Max Age

100 Years

Sex

ALL

Healthy Volunteers

Yes

Timeline & Regulatory

Start

2016-12-06

Primary Completion

2030-12-06

Completion

2035-12-06

Countries

• United States

Study Locations