International PPB/DICER1 Registry
Launched by CHILDREN'S HOSPITALS AND CLINICS OF MINNESOTA · Dec 18, 2017
Trial Information
Current as of June 26, 2025
Recruiting
Keywords
ClinConnect Summary
The International PPB/DICER1 Registry is a study aimed at understanding rare childhood tumors and conditions associated with the DICER1 gene. It focuses on pleuropulmonary blastoma (PPB), a type of lung tumor that can appear in different forms, as well as other related tumors and genetic conditions. By enrolling children and individuals who either have these tumors or carry the DICER1 gene mutation, the researchers hope to learn more about how these conditions develop, how they progress, and what treatments work best.
To be part of this study, participants must have a known or suspected PPB or related tumor, or other DICER1-related conditions like certain types of ovarian or kidney tumors. Anyone with a known DICER1 gene mutation can also join. Parents or guardians will need to give consent for younger participants. This is a great opportunity for families affected by these conditions to contribute to important research that could lead to better care and treatment options in the future. Participants will be guided through the process and receive support from the research team throughout the study.
Gender
ALL
Eligibility criteria
- Inclusion Criteria:
- • 1. Known or suspected PPB or related thoracic tumor
- • 2. Known or suspected sex-cord stromal tumor including Sertoli-Leydig cell tumor and gynandroblastoma (males or females)
- • 3. 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
- • 4. Individuals with known or suspected DICER1 pathogenic variation regardless of whether they have an established DICER1-associated condition
- • 5. Informed consent by patient/ or parent/guardian (also, where appropriate: assent and HIPAA consent)
- Exclusion criteria:
- • Absence of appropriate consent for Registry participation
About Children's Hospitals And Clinics Of Minnesota
Children's Hospitals and Clinics of Minnesota is a leading pediatric healthcare organization dedicated to improving the health and well-being of children through innovative clinical care, research, and education. As a recognized clinical trial sponsor, the organization focuses on advancing pediatric medicine by conducting rigorous, high-quality research to develop new treatments and therapies tailored to the unique needs of children. With a commitment to safety, ethical standards, and community engagement, Children's Hospitals and Clinics of Minnesota strives to enhance the quality of life for children and their families while fostering advancements in healthcare practices.
Contacts
Jennifer Cobb
Immunology at National Institute of Allergy and Infectious Diseases (NIAID)
Locations
Minneapolis, Minnesota, United States
Patients applied
Trial Officials
Kris Ann P Schultz, MD
Principal Investigator
Children's Minnesota
Timeline
First submit
Trial launched
Trial updated
Estimated completion
Not reported
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