It is critical that we continue to collect information on PPB. We ask all families and physicians who use our information to allow us to collect data on every child with PPB. We ask for your help. Every time we receive an inquiry, we will ask to follow the patient.
Families and/or physicians may initiate the enrollment process.
Review Board / Human Subjects Committee Approvals
The International PPB 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 Registry Treatment and Biology Registry Information Portal.
Genetic Study in PPB: A Continuing Scientific Study of PPB Causes
The International PPB 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.