All children with PPB and family members of children with PPB or related tumors and conditions* are encouraged to participate. By participating in the study children with PPB and their family members will make an important contribution to our understanding of this rare tumor. Results of the study may lead to new diagnostic tests and new treatments that may improve survival for children with PPB and adults with other tumor types.

If you or a relative of yours has been diagnosed with pleuropulmonary blastoma or has one of the following conditions*, you are eligible to participate:

• Lung cysts
• Cystic nephroma
• Cystic partially differentiated nephroblastoma
• Ovarian  Sertoli-Leydig tumor
• Juvenile granulosa tumor
• Embryonal rhabdomyosarcoma
• Medulloepithelioma
• Nasal chondromesenchymal hamartoma
• Nodular hyperplasia, cysts or carcinoma of the thyroid gland
  

Study objectives:

• to identify gene changes that may lead to the development of PPB
• to understand how other benign and malignant tumors are associated with these same genes changes within a family, and
• to understand the lifelong medical history of children with PPB

Potential study outcomes

• Identify genes and pathways that prompt new approaches to therapy
• Establish screening guidelines for early cancer detection and could potentially lead to improved survival
• Develop gene-based screening tests to identify family members at risk for PPB and related tumors
• Learn about key processes related to early cell fate decisions in human development and cancer

To participate in the study, children and parents will be asked to do the following:

• Read and sign a consent form that explains the research project
• Provide a small blood sample (blood tubes and mailing kit provided for use by the family physician) or sample of saliva
• Fill out a medical questionnaire
• Allow study coordinators to contact you to go over the medical questionnaire and then again on an annual basis to update your medical information
• Contact additional family members to participate (if applicable)
• Release copies of cancer-related medical records (to confirm exact name and dates of cancer diagnoses)
• Release to the study physicians tissue from PPB and other tumor surgeries

There is no cost to participating in the study.

All information is kept strictly confidential.

You do not have to live in the United States to participate.

 

 

To reach the NCI PPB Study website, click here

 

For more information about participation in the PPB Research Study contact:

D. Ashley Hill, M.D.
Chief of Pathology
Children’s National Medical Center
111 Michigan Ave. NW
Washington, DC  20010
Office phone: (202) 476-2815 or (202) 476-2051
Fax: (202) 476-4030
e-mail: dashill@cnmc.org