Proton and Photon Consortium Registry (PPCR): A Multi Center Registry of Pediatric Patients Treated With Radiation Therapy

May 13, 2026 updated by: Torunn Yock, MD, Massachusetts General Hospital
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.

Study Overview

Status

Recruiting

Conditions

Intervention / Treatment

Detailed Description

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:

  • Patient demographics, date of birth, gender, race, zip code and insurance status
  • Date of diagnosis
  • Histologic or clinical diagnosis and staging relevant to diagnosis
  • Imaging studies obtained and tumor measurements
  • Lab evaluations which include routine blood tests, hormone levels, and any relevant lab results needed to assess you and baseline and follow-up visits
  • Referring physician contact information

Treatment Data Collection: The following data regarding treatment will be collected:

  • Treatments received before radiation therapy, including surgery, chemotherapy, dates and numbers of cycles, results of chemotherapy if available
  • Dates and doses of radiation treatment
  • Side effects observed
  • Any treatments you received at the same time as proton radiation therapy

Follow-up Data Collection: The following data will be collected either as it comes in or annually following completion of your radiation therapy treatment:

  • Disease and survival status
  • Hospitalization, surgeries or other procedures
  • New diagnoses of medical conditions
  • Any lab results, including x-rays
  • Medications you are taking
  • Late side effects such as hearing loss, hormonal issues, any cardiac issues
  • Development of any new types of cancers
  • Dates of treatment after radiation therapy
  • If you discontinued radiation therapy
  • Laboratory/physician/dental or psychological evaluations
  • Use of special services in school (IEP, FM hearing system, one on one tutor, special education) We would like to keep track of your medical condition for the rest of your life. We would like to do this by contacting you or your doctor once a year to see how you are doing. Keeping in touch with you and checking on your condition helps determine the long-term outcomes of individuals treated with proton beam radiation therapy.

In addition to research personnel at MGH, there are others that may have access to the data collected. This includes:

  • Other research doctors and medical centers participating in this research, if applicable
  • Outside individuals or entities that have a need to access this information to perform functions relating to the conduct of this research. For instance copies of your imaging studies and treatment plan will be stored at MIMcloud. MIMcloud is a service offered through MIM Software Inc, a privately held company, that provides diagnostic imaging data management services.

Study Type

Observational

Enrollment (Estimated)

5000

Contacts and Locations

This section provides the contact details for those conducting the study, and information on where this study is being conducted.

Study Contact

Study Locations

  • Australia
    • South Australia
      • Adelaide, South Australia, Australia, 5000
        • Recruiting
        • Royal Adelaide Hospital
        • Contact:
        • Principal Investigator:
          • Hien Le, A/Prof
  • Canada
    • Ontario
      • Toronto, Ontario, Canada, M5G 2C1
        • Recruiting
        • University Health Network - Princess Margaret Hospital
        • Contact:
        • Principal Investigator:
          • Derek Tsang, MD
  • United States
    • California
      • Palo Alto, California, United States, 94304
        • Recruiting
        • Stanford University
        • Contact:
        • Principal Investigator:
          • Susan Hiniker, MD
      • San Diego, California, United States, 92121
      • San Francisco, California, United States, 94143
        • Recruiting
        • University of California San Francisco
        • Principal Investigator:
          • Steve Braunstein, MD
        • Contact:
    • Florida
      • Jacksonville, Florida, United States, 32206
        • Recruiting
        • University of Florida Health Proton Therapy Institute
        • Contact:
        • Principal Investigator:
          • Daniel Indelicato, MD
    • Georgia
      • Atlanta, Georgia, United States, 30308
        • Recruiting
        • Emory University
        • Contact:
        • Principal Investigator:
          • Bree Eaton, MD
    • Illinois
      • Warrenville, Illinois, United States, 60555
        • Recruiting
        • Northwestern Medicine Chicago Proton Center
        • Principal Investigator:
          • Stephen Mihalcik, MD
        • Contact:
    • Maryland
      • Baltimore, Maryland, United States, 21201
        • Recruiting
        • Maryland Proton Treatment Center
        • Principal Investigator:
          • Young Kwok, MD
        • Contact:
    • Massachusetts
      • Boston, Massachusetts, United States, 02114
        • Recruiting
        • Massachusetts General Hospital
        • Contact:
        • Principal Investigator:
          • Torunn I Yock, MD
    • Minnesota
      • Rochester, Minnesota, United States, 55905
        • Recruiting
        • Mayo Clinic
        • Contact:
        • Principal Investigator:
          • Nadia Laack, MD
    • Missouri
      • St Louis, Missouri, United States, 63110
        • Recruiting
        • Washington University
        • Principal Investigator:
          • Stephanie Perkins, MD
        • Contact:
    • New Jersey
      • Somerset, New Jersey, United States, 08873
        • Recruiting
        • ProCure Proton Therapy Center- New Jersey
        • Contact:
        • Principal Investigator:
          • Suzanne Wolden, MD
    • New York
      • New York, New York, United States, 10035
        • Recruiting
        • New York Proton Center
        • Principal Investigator:
          • Suzanne Wolden, MD
        • Contact:
      • Syracuse, New York, United States, 13210
        • Recruiting
        • State University of New York Upstate Medical Center
        • Contact:
        • Principal Investigator:
          • Paul Aridgides, MD
    • North Carolina
      • Chapel Hill, North Carolina, United States, 27514
        • Recruiting
        • University of North Carolina
        • Principal Investigator:
          • Dana Casey, MD
        • Contact:
    • Ohio
      • Columbus, Ohio, United States, 43210
        • Recruiting
        • The Ohio State University
        • Principal Investigator:
          • Joshua Palmer, MD
        • Contact:
      • Liberty Township, Ohio, United States, 45044
        • Recruiting
        • Cincinnati Children's Proton Therapy Center
        • Principal Investigator:
          • John Perentesis, MD
        • Contact:
    • Oklahoma
      • Oklahoma City, Oklahoma, United States, 73142
        • Recruiting
        • Oklahoma Proton Center
        • Contact:
        • Principal Investigator:
          • John H Chang, MD
      • Oklahoma City, Oklahoma, United States, 73142
        • Recruiting
        • ProCure Proton Therapy Center- Oklahoma
        • Contact:
        • Principal Investigator:
          • Jae Y Lee, MD, PhD
    • Pennsylvania
      • Philadelphia, Pennsylvania, United States, 19104
        • Recruiting
        • University of Pennsylvania - Roberts Proton Therapy Center
        • Contact:
        • Principal Investigator:
          • Christine Hill-Kayser, MD
    • Tennessee
      • Knoxville, Tennessee, United States, 37909
        • Active, not recruiting
        • Provision Center for Proton Therapy
    • Texas
      • Houston, Texas, United States, 77030
        • Recruiting
        • MD Anderson Cancer Center
        • Principal Investigator:
          • Arnold Paulino, MD
        • Contact:
      • Irving, Texas, United States, 75063
        • Recruiting
        • Texas Center for Proton Therapy
        • Contact:
        • Principal Investigator:
          • Victor Mangona, MD
    • Utah
      • Salt Lake City, Utah, United States, 84112
        • Recruiting
        • University of Utah
        • Principal Investigator:
          • Matthew Poppe, MD
        • Contact:
    • Washington
      • Seattle, Washington, United States, 98109
        • Recruiting
        • University of Washington- Seattle Cancer Care Alliance
        • Principal Investigator:
          • Ralph Ermoian, MD
        • Contact:

Participation Criteria

Researchers look for people who fit a certain description, called eligibility criteria. Some examples of these criteria are a person's general health condition or prior treatments.

Eligibility Criteria

Ages Eligible for Study

No older than 21 years (Child, Adult)

Accepts Healthy Volunteers

No

Sampling Method

Non-Probability Sample

Study Population

Pediatric patients age <22 treated with radiation therapy

Description

Eligibility Criteria:

  1. Patients treated with radiation therapy at one of the participating centers
  2. Age < 22 at time of treatment start.
  3. Patients may be enrolled regardless of previous local or systemic treatments received prior to enrollment in the PPCR.
  4. Patients may be enrolled regardless of other current local or systemic treatments or disease extent.
  5. Patients may be enrolled on the PPCR concurrently with another study or clinical trial.

Study Plan

This section provides details of the study plan, including how the study is designed and what the study is measuring.

How is the study designed?

Design Details

  • Observational Models: Cohort
  • Time Perspectives: Prospective

Cohorts and Interventions

Group / Cohort
Intervention / Treatment
Pediatric Patients Treated with Protons
Proton Radiation Therapy
Other: No intervention

What is the study measuring?

Primary Outcome Measures

Outcome Measure
Measure Description
Time Frame
Establish Registry
Time Frame: 2 years
Establish a registry of pediatric patients treated with proton radiation therapy in the United States
2 years

Secondary Outcome Measures

Outcome Measure
Measure Description
Time Frame
Describe patterns of care
Time Frame: 2 years
Describe the patterns of care for pediatric patients receiving proton radiation therapy
2 years
Describe patterns of follow-up
Time Frame: 2 years
Describe the patterns of follow-up at proton facilities where patients are often referred from a significant distance and from centers of excellence
2 years
Describe acute and late effects
Time Frame: 2 years
Describe the acute and late effects in the children treated with proton radiotherapy
2 years
Establish a cohort of photon-treated patients
Time Frame: 2 years
Establish a control group of patients treated with photon radiotherapy
2 years

Collaborators and Investigators

This is where you will find people and organizations involved with this study.

Sponsor

Massachusetts General Hospital

Investigators

  • Principal Investigator: Torunn I Yock, MD, Massachusetts General Hospital

Publications and helpful links

The person responsible for entering information about the study voluntarily provides these publications. These may be about anything related to the study.

General Publications

Study record dates

These dates track the progress of study record and summary results submissions to ClinicalTrials.gov. Study records and reported results are reviewed by the National Library of Medicine (NLM) to make sure they meet specific quality control standards before being posted on the public website.

Study Major Dates

Study Start (Actual)

July 1, 2012

Primary Completion (Estimated)

December 1, 2028

Study Completion (Estimated)

December 1, 2028

Study Registration Dates

First Submitted

September 27, 2012

First Submitted That Met QC Criteria

September 27, 2012

First Posted (Estimated)

October 1, 2012

Study Record Updates

Last Update Posted (Actual)

May 14, 2026

Last Update Submitted That Met QC Criteria

May 13, 2026

Last Verified

May 1, 2026

More Information

Terms related to this study

Keywords

Other Study ID Numbers

  • 12-103

This information was retrieved directly from the website clinicaltrials.gov without any changes. If you have any requests to change, remove or update your study details, please contact register@clinicaltrials.gov. As soon as a change is implemented on clinicaltrials.gov, this will be updated automatically on our website as well.

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