International PPB/DICER1 Registry

Plain-language summary

This is an international registry that follows individuals with pleuropulmonary blastoma (PPB) and tumors related to the DICER1 gene. People with known or suspected PPB, related thoracic tumors, or other DICER1-related conditions, as well as those carrying a DICER1 gene change, may take part. It is run as a registry with no assigned phase and is currently recruiting participants.

The summary above is a plain-language rendering of the official record. The original English title is shown for reference.

Trial details

Phase

N/A

Status

Recruiting

Sponsor

Children's Hospitals and Clinics of Minnesota

Start date

12/6/2016

Estimated completion

12/6/2035

Countries

United States

Related genes

Locations

• Minneapolis, United States

Eligibility criteria

Criteria are reproduced from the ClinicalTrials.gov record in the original English. Only the trial team can determine eligibility.

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