International PPB/DICER1 Registry

ConditionsPleuropulmonary 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

Trial statusRecruiting

Trial phaseNot listed

Trial typeObservational

Biological sexAll

Age0-100

SponsorChildren's Hospitals and Clinics of Minnesota

About this trial

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.

Eligibility criteria

Qualifiers

Known or suspected PPB or related thoracic tumor

Known or suspected sex-cord stromal tumor including Sertoli-Leydig cell tumor and gynandroblastoma (males or females)

Other known or suspected DICER1-related condition including ovarian sarcoma, cystic nephroma, renal sarcoma, pineoblastoma, pituitary blastoma, nasal chondromesenchymal hamartoma, ciliary body medulloepithelioma and others

Individuals with known or suspected DICER1 pathogenic variation regardless of whether they have an established DICER1-associated condition

Disqualifiers

None

Trial design

Treatments tested in this trial

Not listed

Trial groups

3,400 Participants

are grouped into 4 trial groups

Sponsors and collaborators

Children's Hospitals and Clinics of Minnesota

Lead sponsor

Washington University School of Medicine

Collaborator

ResourcePath, LLC

Collaborator

University of Cambridge

Collaborator

Emory University

Collaborator

Dana-Farber Cancer Institute

Collaborator

Phoenix Children's Hospital

Collaborator

Allina Health System

Collaborator

University of California, San Francisco

Collaborator

M.D. Anderson Cancer Center

Collaborator

UC Davis Children's Hospital

Collaborator

KK Women's and Children's Hospital

Collaborator

Louisiana State University Health Sciences Center Shreveport

Collaborator

Children's Healthcare of Atlanta

Collaborator

Dayton Children's Hospital

Collaborator

Akron Children's Hospital

Collaborator

Starship Children's Hospital of New Zealand

Collaborator

Beijing Children's Hospital

Collaborator

Bronson Methodist Hospital

Collaborator

Rutgers Cancer Institute of New Jersey

Collaborator

Children's Hospital of Los Angeles (CHLA)

Collaborator

Children's Hospital of Philadelphia

Collaborator

Children's Hospital Medical Center, Cincinnati

Collaborator

Connecticut Children's Medical Center

Collaborator

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

Collaborator

Driscoll Children's Hospital

Collaborator

Hannover Medical School

Collaborator

Jewish General Hospital

Collaborator

Kaiser Permanente

Collaborator

King Faisal Specialist Hospital & Research Center

Collaborator

Kingston Health Sciences Centre

Collaborator

Massachusetts General Hospital

Collaborator

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

Collaborator

National Institutes of Health (NIH)

Collaborator

Royal Perth Hospital

Collaborator

Princess Margaret Hospital for Children

Collaborator

Prisma Health-Upstate

Collaborator

Roswell Park Cancer Institute

Collaborator

The Hospital for Sick Children

Collaborator

St. Jude Children's Research Hospital

Collaborator

Huntsman Cancer Institute/ University of Utah

Collaborator

University of Virginia

Collaborator

University of Texas Southwestern Medical Center

Collaborator

Ann & Robert H Lurie Children's Hospital of Chicago

Collaborator

Source ClinicalTrials.gov