RecruitingOBSERVATIONAL

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

This study is for children and young people under 22 who are having or have had radiation treatment for cancer. It's called the Proton and Photon Consortium Registry (PPCR), and it aims to gather information from many different hospitals. The main goal is to compare newer proton beam therapy with traditional radiation to see which works best and has fewer long-term side effects. While proton therapy seems promising, there isn't a lot of published information yet to prove these benefits over time. By collecting details about how young patients are treated, how they respond, and any side effects, researchers hope to learn more and improve future treatments for children with cancer. Taking part simply means letting your medical information be shared with the study.

At a glance

Status

Recruiting

Sponsor

Massachusetts General Hospital

Enrolment target

5,000

Start

01 Jul 2012

Estimated completion

01 Dec 2028

Pediatric Patients Treated With Radiation Therapy

What is this study about?

This study, called the Proton and Photon Consortium Registry (PPCR), is specifically designed for children and young people under the age of 22 who have received or are currently receiving radiation therapy for cancer. The main purpose of this registry is to gather important information from many hospitals across the country about how young patients are treated with different types of radiation. Doctors want to understand the short-term and long-term effects of these treatments, especially comparing newer 'proton beam therapy' with more traditional radiation.

While proton beam therapy is thought to be better because it can target cancer more precisely and may cause fewer severe side effects in the long run, there isn't enough information published yet to fully confirm this. By collecting details that hospitals already keep, such as the exact type of radiation used, any side effects experienced, and how well patients respond to treatment, researchers can learn a great deal. This collected information will help doctors understand which treatments are most effective and safest for young patients with cancer.

Ultimately, the goal is to improve future treatments for children and young people with cancer. The information you share will help facilitate important research and allow different medical centers to work together. This will help doctors make better decisions about which radiation therapy is best for each child, aiming for the best possible results with the fewest side effects.

Key takeaways

This study collects information about cancer treatment in children and young people.
It aims to compare different types of radiation therapy, including newer proton beam therapy.
Participation means sharing your medical records – no extra appointments or treatments.
The goal is to improve future cancer care for young patients.
You can take part even if you're in another study.
All information is kept private and secure.

Who may be eligible?

This study is open to children and young people who have received radiation therapy for cancer at one of the participating hospitals. You can join if you were under 22 years old when your radiation treatment started.

You can take part regardless of any other treatments you've had before your radiation, or any other treatments you might be having now. This includes surgeries, chemotherapy, or other methods to treat your cancer.

It's also important to know that you can join this study even if you are already participating in another clinical study or trial.

Could this study suit you?

Answer these quick questions to see if you may be eligible. This is a guide only — the research team makes the final call.

Were you under 22 when you started radiation therapy?
Did you receive radiation therapy for cancer at one of the participating hospitals?
Have you had or are you having other cancer treatments (like surgery or chemotherapy)? (This is okay!)
Are you currently taking part in another clinical study? (This is also okay!)

Answer every question to see your result.

What does participation involve?

If you decide to take part in this study, you won't need to do anything extra beyond your usual medical care. You will continue to receive your cancer treatment, check-ups, and follow-up appointments exactly as your doctors recommend, based on what's best for you and your type of cancer. There are no special study drugs or extra tests.

What happens is that information from your medical records will be collected. This includes details about your diagnosis, any other treatments you received (like surgery or chemotherapy) before or after radiation therapy, the specific radiation treatments you had (like dates and doses), and any side effects you experienced. Your doctors will also record how well you're responding to treatment and any changes in your cancer.

A special study nurse or coordinator at your hospital will look at your medical records once a year to update your information in the study database. They might also ask you or your doctor for any new information from the past year. This process continues for as long as needed to track the long-term effects of your treatment.

Potential risks and benefits

Taking part in this study is generally considered very low risk because it mainly involves collecting information that your hospital already has. There are no additional procedures or treatments. The main benefit is that the information gathered from your experience, along with many others, will help doctors better understand different radiation therapies for children with cancer. This could lead to improved treatments and care for future patients. You are free to stop taking part in the study at any time, for any reason, without it affecting your medical care.

Locations (26)

Stanford University
Verified postcode
Palo Alto, United States· Recruiting
California Protons Cancer Therapy Center
Verified postcode
San Diego, United States· Recruiting
University of California San Francisco
Verified postcode
San Francisco, United States· Recruiting
University of Florida Health Proton Therapy Institute
Verified postcode
Jacksonville, United States· Recruiting
Emory University
Verified postcode
Atlanta, United States· Recruiting
Northwestern Medicine Chicago Proton Center
Verified postcode
Warrenville, United States· Recruiting
Maryland Proton Treatment Center
Verified postcode
Baltimore, United States· Recruiting
Massachusetts General Hospital
Verified postcode
Boston, United States· Recruiting
Mayo Clinic
Verified postcode
Rochester, United States· Recruiting
Washington University
Verified postcode
St Louis, United States· Recruiting
ProCure Proton Therapy Center- New Jersey
Verified postcode
Somerset, United States· Recruiting
New York Proton Center
Verified postcode
New York, United States· Recruiting

Common questions

What is 'radiation therapy'?

Radiation therapy uses high-energy rays to shrink tumours and kill cancer cells. It's a common cancer treatment.

What is 'proton beam therapy'?

Proton beam therapy is a newer type of radiation that can target cancer more precisely, aiming to protect healthy tissues nearby.

Will I have to do extra hospital visits?

No, you will not have any extra hospital visits. All your cancer care will continue as usual according to your doctors' advice.

Will this study affect my cancer treatment?

No, this study will not affect your cancer treatment. Your doctors will continue to make decisions about your care based on what is best for you.

Who can see my medical information?

Only authorised study staff and researchers will have access to your information, and it will be kept private and secure.

How to find out more

Torunn I Yock, MD

tyock@partners.org 6177266876 Official trial record

Always speak to your GP or specialist before deciding to take part in a study.