I’M WORRIED ABOUT PEOPLE HAVING ACCESS TO INFORMATION THAT IDENTIFIES ME. HOW WILL YOU PROTECT MY PRIVACY?
Your privacy is very important to us, and we will take appropriate safeguards to protect your privacy. We must collect personal identifying information like your name, address, or phone number so that we can document your consent to participate in the program, collect your medical information, and otherwise manage the program. If you consent to participate in My Reason, we will share your identifiable information with our employees or contractors only as necessary to perform their jobs. We will not share information that identifies you, like your name, address, or phone number, with researchers or anyone else without your consent or unless required by law. Under this consent, the study team will take reasonable precautions and will use industry-standard tools to protect the privacy and security of your samples and information collected by the My Reason research program.
HOW WILL YOU SECURE MY PRIVATE INFORMATION AND THE INFORMATION YOU COLLECT ABOUT ME?
As noted above, we will take reasonable precautions to protect the privacy and security of your samples and information collected by My Reason. Although we will provide certain genomic and medical information to researchers, we will not disclose your name or identifiable information about you such as your name or contact information, unless you specifically consent for us to do so.
HOW WILL MY INFORMATION BE USED?
The information we receive from your sample and medical record will be included in a highly secure database. Before sharing your data with researchers your data will be de-identified to maintain your privacy. The combination of medical and biological information for thousands of individuals with kidney disease and associated conditions is important. It may help researchers to better understand the causes and potential treatments for kidney disease and other medical conditions. These researchers may develop new drugs or tests for diseases.