What is the Registry?

We are a collection of physicians, scientists, and data analysts from many institutions who have been working together for over 30 years to evaluate cases of PPB and more recently DICER1 and its associated conditions. Our main bases of operation are the Childrens' Hospitals and Clinics of Minneapolis and St. Paul, Minnesota, for clinical care issues (visit the Children's Hospital website), Barnes-Jewish and St. Louis Children's Hospitals, St. Louis, Missouri, for pathology issues. Personnel working with the PPB/DICER1 Registry are listed in the Registry Personnel. We are funded mainly by an annual charity tennis tournament dedicated to research in pediatric oncology (Pine Tree Apple Tennis Classic), by the Randy Shaver Cancer Research and Community Fund, and by the Theodora H. Lang Charitable Trust. We are entirely non-profit, interested only in clinical and scientific advancements. There are no charges for information from the Registry.

We are interested in clinical data on any case of PPB, DICER1 and associated conditions, from symptoms, diagnosis, treatments and long-term follow-up. We are also interested in studying certain biological features of this disease from the standpoint of basic science.

The PPB/DICER1 Registry is affiliated with the Rare Tumor Sub-Committee of the Children's Oncology Group (COG), a collection of hospitals in the United States, Canada, Australia, New Zealand, and parts of Europe; the registry is not a formal part of nor supported by COG. The Registry collects cases of PPB, DICER1 and associated conditions for COG.