August 2011: New Types, I, II, and III PPB Registry Treatment and Biology Protocol
To collect a large group of Types I, II and III PPB patients for event-free and overall survival analysis, the Registry encourages registering patients on the new “Treatment and Biology Registry” protocol. Enrollment will allow for the collection of treatment data on patients for whom therapy decisions are made by each institution. The secured PPB Registry Treatment and Biology Registry Information Portal provides physicians with complete details, including a copy of the treatment protocol for treating Types I, II and III PPB.
PPB Registry Treatment Recommendations: PPB therapy choices are the decision of each institution. This Treatment and Biology Registry presents surgery and chemotherapy guidelines for Types I, II, and III PPB. Through the Treatment and Biology Registry protocol study it is anticipated that analysis of a group of similarly treated children with PPB will advance the knowledge of effective ways to treat PPB. The Registry will work with families and physicians on Informed Consent, privacy consent, IRB processing, and related issues. Regardless of enrollment status, the Registry will work with families and physicians on any questions related to PPB.
We strongly encourage you to enroll your patient/your child with the Registry. PPB is a very rare but important disease with perhaps only 35 - 40 cases diagnosed per year. However, PPB is critically important to each patient's family and physicians, and it is biologically important because of the family implications in approximately 25% of cases. PPB is too rare to be of interest to most large cancer research groups, but meaningful data on PPB can be collected by a dedicated group like the participants in the International PPB/DICER1 Registry. Your efforts can make a difference.