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.
Families Most institutions allow patients/families to enroll directly with the Registry using the Registry consent/HIPAA and release forms. Families who want to include their child’s information in the PPB Registry should review the For Families page on this website in order to understand the purposes of the Registry and the protection of patient privacy in use of Registry data. The family should then contact the Registry, (612.813.7115 or email@example.com) to request Registry consent forms which will authorize their child’s hospital and physicians to give information to the Registry. Direct family enrollment often avoids the need for each institution’s IRB/HSC to review the Registry. (For a rare disease, it is often impractical and thus impossible to obtain individual IRB processing.) On the other hand, when necessary, the Registry will work eagerly with IRBs to satisfy requirements.
Physicians 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 http://www.clinicaltrials.gov/ct2/show/NCT01247597?term=ppb&rank=4 for more information.