Registry for rare lung tumors and DICER1-related conditions

Is this trial a fit for you?

A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.

What this trial studies

The International PPB/DICER1 Registry aims to collect and analyze data on pleuropulmonary blastoma (PPB) and other DICER1-associated conditions in children. This observational registry will enroll individuals with known or suspected PPB, Sertoli-Leydig cell tumors, and other related tumors to better understand their clinical course and treatment outcomes. The study builds on previous research and encourages collaboration with international rare tumor groups, while treatment decisions remain at the discretion of the treating institution. The registry will also facilitate retrospective and real-time pathology reviews to enhance the understanding of these rare conditions.

Why it matters

Who can join: the full rules

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

Where it's running

• Children's Minnesota
  Minneapolis, Minnesota, United States Recruiting

Study contacts

• Principal investigator: Kris Ann P Schultz, MD — Children's Minnesota
• Study coordinator: Kris Ann P Schultz, MD
• Email: krisann.schultz@childrensmn.org
• Phone: 612-813-7121

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How to take part

1. Review the eligibility criteria above with your treating physician.
2. Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
3. Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.