Advancing research and supporting families and health professionals

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What is the PPB/DICER1 Registry?

The International PPB/DICER1 Registry’s mission is to improve outcomes for children and adults with pleuropulmonary blastoma (PPB) and other DICER1-related cancers. We are affiliated with a broad collaborative network of hospitals, and will work with families and physicians on any questions related to PPB and other DICER1-related cancers free of charge. Together we can find a cure for PPB/DICER1-related cancers.

What are PPB and DICER1 ?

PPB is a rare lung tumor found primarily in young children.

Learn about PPB

An alteration in the DICER1 gene increases the risk of a variety of cancerous and noncancerous tumors.

Learn about DICER1

Research from the Registry has shown a link between PPB and DICER1
We have learned that nearly all PPB tumors are characterized by variation in the DICER1 gene.
Most but not all of the time, a child who has PPB also has variation in this gene.

Our four strategic pillars

Define optimal therapy for PPB, Sertoli-Leydig cell tumor and other DICER1-related cancers

Validate testing and surveillance guidelines for children and adults with germline DICER1 variations

Develop new ways to diagnose and follow children with DICER1-related cancers

Discover new therapies for DICER1-related cancers

Has your child or patient been diagnosed with PPB or DICER1?

In addition to giving families and caregivers as much information as possible, it is critical that we continue to collect information on PPB, DICER1 and associated conditions. We ask all families and physicians who use our information to allow us to collect data on every child with PPB, DICER1 and the related conditions.

We ask for your help – please enroll with the Registry. After enrolling we will reach out with resources and information to help support you throughout your child’s or patient’s journey.