Frenova is building an infrastructure for genomic research.
Increasingly, leading pharmaceutical companies are researching new drug targets to address very specific populations. These studies require identifying and recruiting patients with specific clinical profiles and genomic markers.
To meet this need now and in the future, Frenova has built out a genomic-specific infrastructure and has created a renal-focused registry of clinical and genomic data. This database, managed under an IRB approved study protocol, can accelerate clinical research and advance the goals of renal precision medicine.
Frequently Asked Questions
WHO IS ELIGIBLE TO PARTICIPATE?
Adults aged 18 or 19 (subject to applicable state laws) and older who live in the United States (including Puerto Rico) with the legal authority to consent and who are capable of providing informed consent are eligible to participate in My Reason.
Individuals who are currently imprisoned or who cannot consent due to physical, cognitive, and/or permanent medical limitations are not eligible to participate in My Reason at this time.
ABOUT THE PROGRAM
My Reason is a research program in which participants provide a biological sample (e.g., blood or saliva) that will be analyzed by researchers. My Reason also will seek permission to collect information from participants’ medical records.
The information we receive from these biological samples and medical records will be included in a database that will be shared with researchers. 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.
As My Reason continues to enroll participants, the study team will share updates on how this program is contributing to research on our website.
Once your eligibility for My Reason is confirmed, you will be prompted to work through the enrollment and consent process through the My Reason Participant Portal. This portal is hosted by REDCap Cloud and you will be receiving an email directly from them with a link to set up your account and enter the portal. You will be able to view additional instructions and download them from this portal, but if you need to access them at another time, feel free to download this document.
COST AND PAYMENT
There is no cost to you or to your insurance company for participating in My Reason.
You will not be compensated for participating in My Reason.
There are no medical or monetary benefits to you for taking part in this research. However, participating in My Reason may help researchers learn more about human health and disease, including kidney disease. This may lead to better ways of detecting or treating disease and could potentially help other people in the future.
To achieve this, samples and information collected may be licensed or shared with researchers, which may also result in products or inventions (such as medicines or therapies) that result in commercial profit. Researchers may also be charged for access to information collected by My Reason. Participants in this program, their families, or their heirs will not share in any possible future profits.
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.
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.
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.