What the Registry Provides?

Most importantly, we provide a central collection of information on PPB, DICER1 and related conditions for all interested parties. The most well-documented conclusions about PPB, DICER1 and related conditions are in published reports of ours (Registry Publications and others (see PubMed or Google Scholar). However, as we continue to collect data, we will share it with caregivers and medical professionals as quickly as possible. We make some recommendations regarding chemotherapy and radiation therapy, but treatment remains in the hands of the treating team. The Registry recommends chemotherapy for most Types of PPB. Types II and III PPB in older children is an aggressive cancer, and aggressive therapy is necessary. We recommend less aggressive therapy for Type I (but we recognize that not all pediatric oncologists will agree with or follow this recommendation). We collect data on chemotherapy effectiveness and will share what we can with caregivers.

The Registry will answer inquiries from family members, especially to direct them to sources of information, but we will continue to turn families back to their local treating physicians for all decision making. Pediatric cancer treatment is a long-term process, which requires dedicated local attention. We cannot and do not provide that from a long distance. We can provide data on this rare disease, but we do not believe we are any better at treating PPB, DICER1 and associated conditions than caregivers in any experienced pediatric cancer facility. Furthermore, individual treating physicians will have their own sensible ideas about what each patient and family needs, and we are no substitute for that.