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The Pediatric Proton Consortium Registry (PPCR) was established in 2012 to expedite proton outcomes research to assure access to those pediatric patients who can benefit the most from it. It is the most comprehensive multi-institutional radiation based patient registry in existence and unique in its scope and depth.
Additional objectives of the PPCR registry are to:
Radiotherapy is often integral to attaining a cure in pediatric cancer patients. However, it can have adverse side effects that manifest over time as we irradiate in a dose- and age-dependent manner. Radiation is known to inhibit the growth and development of tissue, irrespective of healthy or cancerous tissue. Curable brain tumors are the most common solid tumor in pediatric population and often require radiotherapy to cure them. However, brain radiotherapy can affect neurocognitive development, hearing and neuroendocrine function, as well as have adverse psychosocial effects. Solid tumors located outside the brain that often require radiotherapy for cure include: sarcomas, neuroblastomas, and numerous varieties of other tumors. Radiotherapy to these other parts of the body can have adverse functional and cosmetic consequences. Radiation therapy is a carcinogen, and, while effective at curing a tumor, places a child at increased risk for a radiation-induced tumor many years later. In combination, these adverse health effects can impact a childhood cancer survivors’ quality of life, and even shorten their lifespan.
Proton radiotherapy, although not technically a “new” treatment, is a modality that only recently is becoming a readily available treatment option in the United States. Proton radiotherapy has unique physical characteristics that provide a significant advantage over even the most technically sophisticated photon based radiotherapy. Proton radiotherapy is a form of radiation that better places dose into the desired target, while minimizing dose to surrounding normal tissue by a factor of two to three over photon therapy. Since the adverse side effects of radiation therapy are directly correlated with dose to normal tissues, the use of protons should reduce the prevalence and severity of late adverse side effects, a significant advantage in treating pediatric patients. There is ample dosimetric data supporting this hypothesis, but clinical data is scant. Due to the heterogeneity and relative rarity of pediatric cancers, amassing clinical data takes a significant amount of time, and any single institution would be hampered by limited patient numbers. Thus the success of this registry is founded on the collaborative efforts of each participating institution to provided data and together, benefit from our joint contributions.
Accrual as of March 15, 2017: 1,629 patients
Massachusetts General Hospital- Lead Institution Overall and Site PI: Torunn I. Yock, MD, MCH Date Approved for Enrollment: 10/2012
Northwestern Medicine Chicago Proton Center Site PI: William Hartsell, MD Date Approved for Enrollment: 9/2013
University of Florida: Health Proton Therapy Institute Site PI: Daniel Indelicato, MD Date Approved for Enrollment: 10/2013
Washington University: S. Lee Kling Proton Therapy Center Site PI: Stephanie Perkins, MD Date Approved for Enrollment: 2/2014
MD Anderson Proton Therapy Center Site PI: Arnold dela Cruz Paulino, MD Date Approved for Enrollment: 5/2014
University of Pennsylvania: Perelman Center for Advanced Medicine Site PI: Christine Hill-Kaiser, MD Date Approved for Enrollment: 2/2014
University of Washington: Seattle Cancer Care Alliance Site PI: Ralph Ermoian, MD Date Approved for Enrollment: 2/2016
ProCure Proton Therapy Center- New Jersey Site PI: Oren Cahlon, MD Date Approved for Enrollment: 6/2016
ProCure Proton Therapy Center-Oklahoma CitySite PI: Andrew L. Chang, MD Date Approved for Enrollment: 6/2016
Mayo Clinic Rochester: Proton Beam Therapy Program Site PI: Nadia Laack, MD Date Approved for Enrollment: 9/2016
Texas Center for Proton Therapy Site PI: Victor Mangona, MD Date Approved for Enrollment: 11/2016
Maryland Proton Treatment Center Site PI: Young Kwok, MD Date Approved for Enrollment: 2/2017
All pediatric patients (defined as <22 years old) receiving proton radiation at participating centers are eligible to be enrolled in the study. Data is captured via REDCap, a secure, web- based data collection platform with online survey capabilities. Currently, there are over 2,000 potential data fields collecting information on demographics, diagnosis, baseline treatment and health details, as well as follow up health information. The database is constructed using branching logic, such that only fields relevant to the previous answers are presented, and subsequent questions populate based on data input. Additionally, Patient Reported Outcome Measures (PROMs) are currently being incorporated. The PedsQL Quality of Life (QoL) survey has been administered through the PPCR at Massachusetts General Hospital and is being rolled out to our participating institutions to further bolster the database. Additionally, treatment planning CT and RT plans are submitted to QARC/IROC RI (with diagnostic imaging at baseline and follow up). http://www.qarc.org/
The PPCR is registered on www.clinicaltrials.gov with the identifier NCT01696721, Torunn Yock, MD Responsible Party.
The project was supported by the Federal Share of program income earned by Massachusetts General Hospital on C06 CA059267, Proton Therapy Research and Treatment Center.
Interested in supporting this work or the Pediatric Proton Center?
Natassya Bedos: Multi-Center Coordinator, Massachusetts General Hospital firstname.lastname@example.org Tel: 617-643-6086
Sara Gallotto: Project Manager, Massachusetts General Hospitalsgallotto@mgh.harvard.eduTel: 617-643-9947Torunn I Yock, MD MCH: Consortium Principal Investigator, Massachusetts General Hospitaltyock@mgh.harvard.edu
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