Frequently Asked Questions
Project Milestones is an NIH-funded study designed to identify the issues that young adult (AYA) cancer survivors face by looking at their health care and survivorship care. Study participants who are over the age of 21 and have previously been diagnosed with cancer were randomly selected to participate. The study involves a questionnaire that aims to understand their experiences with cancer. By participating in the study, the information gathered will help us develop approaches to improve the health behaviors and long-term healthcare for cancer survivors.
We understand very little about the experience young adult cancer survivors face because they are underrepresented in cancer survivorship research. What we know is that patients in this group face unique challenges that can affect a person over their lifetime. This research can help other young adult cancer patients in the future, as well as help healthcare providers and health insurance companies to provide better care.
Every cancer case in the state of California is automatically reported to the California Cancer Registry. The registry only releases your information to research and public health institutions for studies approved by the Institutional Review Board. Your information is only handled by people who have been trained in HIPAA protocol. Your responses will never be released to your insurance, healthcare provider, or anyone else.
The California Cancer Registry is a statewide cancer surveillance system designed to collect information on all cancers and all benign brain tumors for all California residents. In the mid 1980s, California passed into law stating that cancer is a reportable disease. Your physician or medical physician did not inform the Cancer Registry; there are qualified cancer registry technicians who report the information. For more information, check out the California Cancer Registry website or check out the brochure included in our Project Milestones letter.
Our study is a simple questionnaire that asks about your experiences as a cancer patient and survivor. We will use the information about what we learn to apply to current and future cancer patients. The time to complete the survey is about 30-45 minutes. The questions are about your experience and how it impacts your life today. Some of the questions are quite personal, so feel free to skip any questions that you do not feel comfortable answering. When you get to the end, we will send you a $30 gift card as compensation for your time.
The survey is offered in English and Spanish. If you need help taking the survey, please call Virginia at (323) 285-0273 and we can get one of our volunteers can help you.
La encuesta se ofrece en inglés y español. Si necesita ayuda para completar la encuesta, llame a Virigina al (323) 285-0273 y podemos hacer que uno de nuestros voluntarios lo ayude.
The study survey does not include any personal identifiers. The study ID, which is included on the survey, can be linked to personal identifiers but these identifiers are kept separate in a password secured file, away from the survey responses. As a result, the survey is not anonymous, but all information is kept private and confidential to the fullest extent possible. All staff are trained in protecting confidentiality and take confidentiality pledges.
Our procedures have also been reviewed by a human subjects’ committee. Our investigators have a long history of conducting studies concerning cancer survivors as well. There has never been a breach of confidentiality and we take our commitment to protecting your information seriously.
When the study and data is published, the information is presented in aggregate, in the form of charts and tables. Information on specific individuals is NEVER released.
No, unfortunately we do not have the ability to remove your name on the registry because it is a state-run program. However, we will note not to contact you in the future for other studies.
Our study is federally funded by the National Institute of Health (NIH). Our research is conducted at the University of Southern California and the University of California, Irvine (UCI). You can check out our grant details here.
You can check out our department website at the Center for Young Adult Cancer Survivorship Research.
If you take the survey online, we will send you a $30 Amazon.com claim code to the email you provide in the “gift card survey” which appears after the survey submission.
If you leave the gift card survey blank, we will mail you a $30 Target gift card to your address (the same address we mailed our letter and brochures).
For paper surveys sent to us, we will mail back a $30 Target gift card.
We are studying cases of cancer diagnosed between 2010 and 2017, aged 21-39 years old at the time of diagnosis, with a minimum of 3-10 years since their diagnosis. We are only studying cases reported in Los Angeles and Orange County at the time of diagnosis. Most participants are between the ages of 24 to 49 years old now.
The data from our research speaks loudest when it is summarized and presented as a group. Your responses will only be reported this way, which makes the information more likely to influence health care policies. Our goal is to have over 2,000 enrolled participants.
Yes we can! If you are visually or physically impaired, one of our volunteers can schedule a time with you to read the survey over the phone with you.
Please feel free to give our study coordinator, Denise, a call. Her number is (323) 865-3639.