The Pediatric Proton/Photon Consortium Registry, also known as the PPCR, is a research study that aims to learn from every child and young adult treated with radiation. The PPCR is a collaborative effort among 17 radiation centers around the United States. Patients under the age of 22 years old are approached about participation. We are so appreciative to all of our participates – there are over 3,200 of them! Together, the goal of our research is to improve cancer treatments and quality of life in childhood cancer survivors.
Pediatric cancers account for less than 1% of all new cancer diagnoses made in the United States each year. Because pediatric cancers are rare and highly varied, studying treatment outcomes is challenging and limits the ability of any one medical center to amass enough clinical data to generate timely empirical results. It is therefore necessary for many centers to work together. We are a dedicated research team that consents families, performs data entry, and publishes results. There are no specific treatments or tests associated with our study. As a registry, we use observational study methods to evaluate short- and long-term outcomes on any patient treated with radiation, regardless of their diagnosis.
Our data is entered into a web-based data collection platform called REDCap. REDCap is a secure platform supported by the National Institutes of Health (NIH). There are over 1,500 data fields. We collect demographics, diagnosis, treatment, imaging, and symptom data. Participants can also complete quality of life questionnaires that allow us to learn more about the experiences of our patients. Radiation plans and imaging are stored in a platform called MIMcloud. This allows us to correlate radiation dose to various areas in the body with symptoms and quality of life outcomes.