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International PPB/DICER1 Registry

StatusRecruiting
PhaseNot specified
Started
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Record History

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  1. Collaborators: 20 to 43v7
  2. Primary completion date: Dec 6, 2025 to Dec 6, 2030
    • Study completion date: Dec 6, 2028 to Dec 6, 2035
    • Site contact updated
    • Collaborators: 13 to 20
    v6
  3. Primary completion date: Dec 6, 2023 to Dec 6, 2025v5 Show 4 more changesShow less
    • Study completion date: Dec 6, 2026 to Dec 6, 2028
    • Site contact updated
    • Collaborators: 7 to 13
    • Publications: 31 to 33
  4. Re-verified, no change to tracked fieldsv4
  5. Enrollment target: 200 to 3400
    • Publications: 2 to 31
    v3
  6. Enrollment target: 100 to 200v2 Show 6 more changesShow less
    • Eligibility criteria shortened, about 108 words
    • Secondary endpoints: details revised at 2 of 6 entries
    • Study site revised
    • Collaborators: 2 to 7
    • Study title shortened, about 6 words
    • Study description expanded, about 2 words
  7. Study First Submitted
  • Stopped: an ongoing trial was terminated, suspended or withdrawn.
  • Notable: the trial’s plan changed such as a big move in its timeline or size, a new primary endpoint, sponsor or phase, or recruiting opened or resumed.
  • Minor: routine progress and housekeeping, such as sites added or enrollment closed.
Children's Hospitals and Clinics of Minnesota
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and 2 more diseases
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.
Trial Details
NCT Number NCT03382158
Lead Sponsor Children's Hospitals and Clinics of Minnesota
Collaborators: Washington University School of Medicine, ResourcePath, LLC, University of Cambridge, Emory University, Dana-Farber Cancer Institute, Phoenix Children's Hospital, Allina Health System, University of California, San Francisco, M.D. Anderson Cancer Center, UC Davis Children's Hospital, KK Women's and Children's Hospital, Louisiana State University Health Sciences Center Shreveport, Children's Healthcare of Atlanta, Dayton Children's Hospital, Akron Children's Hospital, Starship Children's Hospital of New Zealand, Beijing Children's Hospital, Bronson Methodist Hospital, Rutgers Cancer Institute of New Jersey, Children's Hospital of Los Angeles (CHLA), Children's Hospital of Philadelphia, Children's Hospital Medical Center, Cincinnati, Connecticut Children's Medical Center, Federal Scientific Clinical Centre of Pediatric Hematology, Oncology and Immunology named after Dmitry Rogache, Driscoll Children's Hospital, Hannover Medical School, Jewish General Hospital, Kaiser Permanente, King Faisal Specialist Hospital & Research Center, Kingston Health Sciences Centre, Massachusetts General Hospital, McGill University Health Centre/Research Institute of the McGill University Health Centre, National Institutes of Health (NIH), Royal Perth Hospital, Princess Margaret Hospital for Children, Prisma Health-Upstate, Roswell Park Cancer Institute, The Hospital for Sick Children, St. Jude Children's Research Hospital, Huntsman Cancer Institute, University of Virginia, University of Texas Southwestern Medical Center, Ann & Robert H Lurie Children's Hospital of Chicago
Conditions
(from sponsor)		 Pleuropulmonary Blastoma, Sertoli-Leydig Cell Tumor, DICER1 Syndrome, Cystic Nephroma, Wilms Tumor, Pineoblastoma, Renal Sarcoma, Nodular Hyperplasia of Thyroid +11 more
Related terms Disease, Goiter, Nodular, Neuroblastoma, Pinealoma, Pituitary Neoplasms, Pleuropulmonary blastoma, Rhabdomyosarcoma, Embryonal, Sertoli-Leydig Cell Tumor, Sex Cord-Gonadal Stromal Tumors, Thyroid Neoplasms, Thyroid Nodule, Wilms Tumor
Enrollment 3,400 participants
Start Date
Primary Completion (estimated)
Study Completion (estimated)
Updated on ClinicalTrials.gov