For Our Participants
If you receive radiation therapy at one of our participating sites and are under the age of 22, you are likely to be approached about consent. Participation is optional and your decision will have no influence over the treatment and care you receive. There is no cost to participating in the study. Our study also does not cover any expenses of your treatment. You may be asked to complete quality of life questionnaires during the first and last week of your radiation treatment. All other aspects of the research will be completed by the radiation center’s research team. You may be contacted annually for an update on your health and asked to complete a quality of life questionnaire. If you do not return to your radiation oncologist for follow-up care, we encourage you or your home doctor to share notes.
Email us at PedsProtonReg@Partners.org. We are happy to hear from you and can confirm your participation.
We are excited to hear how you are doing after treatment! Please send us or have your home doctor send your yearly clinic notes. We are looking for any of the following notes:
- Yearly History and Physical
- MRI Reports
- Hearing Tests
- Endocrine Reports
- Neuropsych Reports
- Any other notes specific to your care
Please reach out to us if you are unsure where to send your notes at PedsProtonReg@Partners.org.
You are receiving the Quality of Life (QoL) Questionnaires because you have agreed to take part in this optional part of the PPCR. They are sent via email as a REDCap Survey or via mail as a packet with a stamped return envelope inside.
The QoLs allow us to understand how proton radiation treatment impacts your quality of life. The questionnaires are given to you and/or your parents to complete prior to treatment, at the end of treatment, and then, once yearly after you have completed radiation treatment. They should take you 5-10 minutes to complete each section.
You will receive a letter after you turn 18 asking if you would like to continue to participate in the PPCR. This process may vary by the institution you were treated at.
Please reach out to us with any questions regarding your continued participating and what is expected of you.
You can support the PPCR by sending us information from your home care team on how you are doing.
You can support us financially by donating to our research HERE!
All proceeds go directly to the PPCR project.
If you would like to organize a fundraiser or event to support the PPCR and pediatric oncology research, please reach out to us at PedsProtonReg@Partners.org. We would love to support your efforts!
You can stop being part of the PPCR at any time. If you decide to stop participating in the PPCR, your medical care or relationship with your care team will not be affected.
Please contact us at PedsProtonReg@Partners.org if you would like to withdraw.