International Registry for PPB and DICER1-Related Conditions
This study is an international registry for people with Pleuropulmonary Blastoma (PPB), a rare lung cancer in children, and other conditions linked to a gene change called DICER1. The registry aims to understand how these tumors and conditions develop, how they progress, and what treatments work best. You might be able to join if you have known or suspected PPB, certain sex-cord stromal tumors (like Sertoli-Leydig cell tumor), or other conditions related to DICER1, such as cystic nephroma or Wilms tumor. This study is observing participants from birth to 100 years old. The main goal is to track how long people live without certain events (like the cancer returning) over 7 years.
- Study design
- This is an observational study planning to include 3400 participants. It is not testing a specific intervention but rather collecting information.
- What's involved
- Not specified in the trial record.
- Compensation
- Not stated in the trial record.
- Follow-up
- Participants' event-free survival will be measured at 7 years.
AI-generated from the public study record. Only the study team can confirm whether you're eligible — confirm details with them before making decisions.
International PPB/DICER1 Registry
At a glance
Conditions
Where it's being run
1 sites across 1 statesStudy leadership
- Kris Ann P Schultz, MD · PRINCIPAL_INVESTIGATOR · Children's Minnesota
Who to contact
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What this trial measures
- Event-free survival7 years
The primary endpoint for statistical analysis will be time from start treatment to an event, defined as the occurrence of progression or recurrence of PPB, occurrence of a second malignant neoplasm, or death from any cause that is at least possibly related to the original disease or treatment.