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. We ask for your help. Every time we receive an inquiry, we will ask to follow the patient.
Please note families and/or physicians may initiate the enrollment process.
Review Board / Human Subjects Committee Approvals
The International PPB/DICER1 Registry is approved on a continuing basis by the IRB of Children’s Hospitals and Clinics of Minnesota.
Can access enrollment forms at the secured PPB/DICER1 Information Portal.
Genetic Study in PPB: A Continuing Scientific Study of PPB Causes
The International PPB/DICER1 Registry is conducting a major study of genetic inheritance in PPB patients and their families. We ask that all PPB patients and their families consider participating. Visit http://www.ppbgeneticstudy.org/ or ppb.cancer.gov for more information.