You are eligible to take this survey if you were diagnosed with a cancer between the ages of 18 and 39 years of age. You can be off therapy or still receiving it. There is no payment for participating in this survey. All participation information is strictly confidential. Your participation will help to create answers leading to new hope.
Great progress has been made in cancer treatments and survival rates over the past decades. But not nearly as much for adolescent and young adult (AYA) patients ages 15 to 39. The last longitudinal population-based study of the AYA oncology population in the United States was conducted in 2010. CAYACC intends its survey to act as a significant next benchmark study of the AYA cancer patient population. Our goal is to see what positive changes have taken place since 2010, what challenges still exist, and where our next step might best be focused to advance needed progress in this field. Our long-term objective? To turn the "C" word into a whole new lexicon: like Change, Control, Champion, Collaboration... and Cures.
The study is approved by the Internal Review Board at Roswell Park Cancer Institute, the center that will coordinate the data collection. This work is funded in-part by a grant from Hyundai Hope On Wheels, a 501(c)(3) nonprofit organization. Data and insights gained from CAYACC's National AYA Cancer Patient and Survivor Survey will inform follow-up studies and the creation of additional nationwide partnerships.
No personal identifying information is asked for or collected in this study. However, this research survey utilizes REDCap, a secure web application for building and managing online surveys and databases. REDCap was developed at Vanderbilt University. It is used to collect data in HIPAA-compliant environments, and is specifically geared to support online or offline data capture for research studies. We are using REDCap to ensure the utmost protection of all information entered and provided to us.
The Consortium of Adolescent and Young Adult Cancer Centers (CAYACC) was founded in 2015 to collaboratively help accelerate progress, understanding and improvements in the field of adolescent and young adult cancer. Read more about CAYACC and its goals.
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