INFORMATION FOR PATIENTS
Repository Info for Patients
What is a Repository for the FSGS study?
A respository is a place where DNA, blood, and urine are stored and maintained.
Why are my DNA (genetic material), blood, and urine being stored for the FSGS study?
Your samples are being stored to be used at a later date for special studies by researchers. These studies may help develop new tests, treatments and/or ways to diagnose or prevent FSGS in the future.
How is my privacy protected?
A number is used for identification of your samples rather than using a name or even initials. No information about you will be released without your permission.
Will extra blood be needed for the Repository?
Yes, but the amount taken is safe and should cause no harm because it is calculated based on your body size.
What if I decide I don’t want my blood used after I have consented?
Your participation is voluntary. You can withdraw your consent at any time.In addition, you may ask to have all of your stored DNA, blood, and urine removed from the repository at any time during the study.
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