Future research
Your data and samples will be stored.
We may share your data and samples (urine and sputum) with other researchers for future CF research.
- Your data will be stored on secure servers at Seattle Children’s Hospital. We will keep your data indefinitely.
- Your samples (urine and sputum) will be stored in the specimen bank. We will keep your samples indefinitely or until they are used up.
Your data and samples can be shared.
- This information will be coded so future researchers will not be able to identify you.
- This will only be shared with researchers who have approval from their and the CFF.
- For-profit companies will need the same approval before any data or samples will be given to them.
- You will not be told that your data or samples are used for future research, and you will not be given individual results.
- If any new therapies, products, or procedures are developed from your data or samples, you would not receive any money.
- Results from research studies using your data or samples may be published in medical journals or presented at scientific meetings, but your name and other identifying information will not be used.
CFF Patient Registry data
You previously enrolled in the CFF Patient Registry, a database that contains information about the clinical care of people with CF (such as hospitalizations and medications).
- We will use your CFF Registry identification number (ID) to link your clinical care information in the registry (past, present, and future) to your stored samples and data from this research study.
- Your CFF Registry ID may also be used to link data from this study with other studies that you enroll in.
What if you change your mind about sharing your data or your samples?
If you change your mind during the study, please tell the research team. If you change your mind after the study is over, you may contact the CFF at biorepository@cff.org. Your data and samples will no longer be shared but what has already been shared with researchers may continue to be used.