If I join the RARE Registry, what am I committing to?
You will be asked to complete eight surveys, with your information on the following topics: demographics, disease history, genetic & biomarker testing, monitoring cancer progression, overall health & lifestyle, treatment overview, treatment timeline, and quality of life. On average, it may take you anywhere between 30 to 75 minutes to complete the initial set of surveys. Every four months you will be asked to fill out a new quality of life survey and update your treatment timeline (this will take significantly less time than what is required to complete the initial surveys).
Your participation is entirely optional, and you may withdraw at any time.