This project will collect data from your provided medical records, with identifying information (e.g. your name and date of birth) removed to protect your privacy. By combining your data with others, we can gather information about larger numbers of patients with your type of cancer. From this we hope to get a better understanding of why your type of rare cancer developed, the genetic changes associated with your cancers, and how it responds to treatment. Your medical information is especially important for helping rare cancer research as it is much harder to gather large amounts of information for rare cancers. This is helpful whether you never had treatment, are currently having treatment, or previously received treatment for your cancer.
Because we collect this information for research we need your permission to proceed. In addition, you have the option of agreeing to be contacted again in the future to provide blood, a hair sample, or a tissue sample. We will only contact you about this if there is a specific research program for your type of cancer. We don’t necessarily need you to provide anything right now if you agree.
The participant information and consent form provides more detail about the project and its aims which you are welcome to read here.