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In previous studies, Proton Beam Radiation Therapy (PBRT) has been found to show better results in treating patients with cancer, both because there is better control of where in the body the radiation is directed and because it is associated with less severe long term side effects. However, there is limited published data demonstrating these results. The goal of the Proton and Photon Consortium Registry (PPCR) is to enroll children treated with radiation in order to describe the population that currently receives radiation and better compare the short-term and long-term benefits of different types of radiotherapy. The data collected from this study will help facilitate research on radiation therapy and allow for collaborative research. The PPCR will collect demographic and clinical data that many centers that deliver radiation therapy already collect in routine operations.
Once you are enrolled in the study, you will receive treatment, evaluations and follow up care for your type of cancer as determined by your treating physician according to clinical judgment and standard of care for your clinic. All treatments that you receive will be recorded, including all surgeries and chemotherapy given before or after PBRT. Treatment outcomes, like how you respond to treatment, side effects, and progression of your cancer will be collected as the information becomes available. A study coordinator or research nurse at your clinic will perform a chart review annually to update your status in the database. The study doctor will request any new data within the past year from you or your doctor.
We will be collecting the following data for the Registry:
At Screening: The following data will be collected from the time of diagnosis and initial staging:
Treatment Data Collection: The following data regarding treatment will be collected:
Follow-up Data Collection: The following data will be collected either as it comes in or annually following completion of your radiation therapy treatment:
In addition to research personnel at MGH, there are others that may have access to the data collected. This includes:
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| Label | Type | Description | Intervention Names |
|---|---|---|---|
| Pediatric Patients Treated with Protons | Proton Radiation Therapy |
|
| Name | Type | Description | Arm Group Labels | Other Names |
|---|---|---|---|---|
| No intervention | Other |
|
| Measure | Description | Time Frame |
|---|---|---|
| Establish Registry | Establish a registry of pediatric patients treated with proton radiation therapy in the United States | 2 years |
| Measure | Description | Time Frame |
|---|---|---|
| Describe patterns of care | Describe the patterns of care for pediatric patients receiving proton radiation therapy | 2 years |
| Describe patterns of follow-up | Describe the patterns of follow-up at proton facilities where patients are often referred from a significant distance and from centers of excellence |
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Eligibility Criteria:
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Pediatric patients age <22 treated with radiation therapy
| Name | Role | Phone | Extension | |
|---|---|---|---|---|
| Torunn I Yock, MD | Contact | 6177266876 | tyock@partners.org |
| Name | Affiliation | Role |
|---|---|---|
| Torunn I Yock, MD | Massachusetts General Hospital | Principal Investigator |
| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| Stanford University | Recruiting | Palo Alto | California | 94304 | United States |
| PubMed Identifier | Type | Citation | Retractions |
|---|---|---|---|
| 40358803 | Derived | Krisch JM, Ermoian RP, Indelicato DJ, Lee JY, Perentesis JP, Perkins SM, Laack NN 2nd, Chang JH, MacEwan IJ, Wolden SL, Wang D, Yock TI, Aridgides PD. Outcomes following radiation therapy for embryonal tumor with multilayered rosettes (ETMR): results from the Pediatric Proton/Photon Consortium Registry (PPCR). J Neurooncol. 2025 Sep;174(2):369-380. doi: 10.1007/s11060-025-05065-2. Epub 2025 May 13. |
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| 2 years |
| Describe acute and late effects | Describe the acute and late effects in the children treated with proton radiotherapy | 2 years |
| Establish a cohort of photon-treated patients | Establish a control group of patients treated with photon radiotherapy | 2 years |
| California Protons Cancer Therapy Center | Recruiting | San Diego | California | 92121 | United States |
|
| University of California San Francisco | Recruiting | San Francisco | California | 94143 | United States |
|
| University of Florida Health Proton Therapy Institute | Recruiting | Jacksonville | Florida | 32206 | United States |
|
| Emory University | Recruiting | Atlanta | Georgia | 30308 | United States |
|
| Northwestern Medicine Chicago Proton Center | Recruiting | Warrenville | Illinois | 60555 | United States |
|
| Maryland Proton Treatment Center | Recruiting | Baltimore | Maryland | 21201 | United States |
|
| Massachusetts General Hospital | Recruiting | Boston | Massachusetts | 02114 | United States |
|
| Mayo Clinic | Recruiting | Rochester | Minnesota | 55905 | United States |
|
| Washington University | Recruiting | St Louis | Missouri | 63110 | United States |
|
| ProCure Proton Therapy Center- New Jersey | Recruiting | Somerset | New Jersey | 08873 | United States |
|
| New York Proton Center | Recruiting | New York | New York | 10035 | United States |
|
| State University of New York Upstate Medical Center | Recruiting | Syracuse | New York | 13210 | United States |
|
| University of North Carolina | Recruiting | Chapel Hill | North Carolina | 27514 | United States |
|
| The Ohio State University | Recruiting | Columbus | Ohio | 43210 | United States |
|
| Cincinnati Children's Proton Therapy Center | Recruiting | Liberty Township | Ohio | 45044 | United States |
|
| Oklahoma Proton Center | Recruiting | Oklahoma City | Oklahoma | 73142 | United States |
|
| ProCure Proton Therapy Center- Oklahoma | Recruiting | Oklahoma City | Oklahoma | 73142 | United States |
|
| University of Pennsylvania - Roberts Proton Therapy Center | Recruiting | Philadelphia | Pennsylvania | 19104 | United States |
|
| Provision Center for Proton Therapy | Active, not recruiting | Knoxville | Tennessee | 37909 | United States |
| MD Anderson Cancer Center | Recruiting | Houston | Texas | 77030 | United States |
|
| Texas Center for Proton Therapy | Recruiting | Irving | Texas | 75063 | United States |
|
| University of Utah | Recruiting | Salt Lake City | Utah | 84112 | United States |
|
| University of Washington- Seattle Cancer Care Alliance | Recruiting | Seattle | Washington | 98109 | United States |
|
| Royal Adelaide Hospital | Recruiting | Adelaide | South Australia | 5000 | Australia |
|
| University Health Network - Princess Margaret Hospital | Recruiting | Toronto | Ontario | M5G 2C1 | Canada |
|