Who is eligible to participate?
All children with PPB and family members of children with PPB 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.
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 preserved tissue from PPB and other tumor surgeries