Welcome to the My Reason® Research Program
My Reason is a research program inviting a large number of people to help build a diverse health database. This health database will help researchers better understand the causes and potential treatments for kidney disease and associated diseases. We welcome participants from all backgrounds. Our goal is to develop the world’s largest collection of patient data to support kidney disease research. This knowledge can then be used to improve patient care.
Participants help this research by consenting to share their genetic information (such as the sequence of their DNA) and health information in their medical records. By participating in My Reason, you can join an effort which may help develop new drugs or tests for diseases including kidney disease.
How It Works
Use the resources here, on the My Reason website, to learn more about this important research and how you can be a part of this exciting program.
Read the consent form to understand how your genetic and health information may be collected, used, or disclosed by the My Reason research program, among other details.
If you are a Fresenius Kidney Care (FKC) patient, a study team member will collect leftover blood from your routine lab blood draw. There is no need for you to take any action to provide a sample after consenting to the study. If you are not an FKC patient, we welcome your participation, but will not be collecting your sample at this time. We look forward to providing you with information on your sample collection soon.
Frequently Asked Questions
Who is eligible to participate?
Adults age 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.
What is My Reason? What are its research goals?
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.
How can I find out about the activities of the My Reason Research Program?
As My Reason continues to enroll participants, the study team will share updates on how this program is contributing to research on our website.
Are there additional instructions to help with enrollment?
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.
Does participating in My Reason cost me anything?
There is no cost to you (or to your insurance company) for participating in My Reason.
Will I be paid for taking part in this research?
You will not be compensated for participating in My Reason.
Are there benefits to being a part of this initiative?
There are no known benefits to you for taking part in this research. The main benefit of participating in My Reason is helping researchers learn more about human health and disease, including kidney disease. This may lead to better ways to detect and treat disease and keep people healthy 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. Frenova also may charge researchers 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.
I’m worried about people having 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 Frenova 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 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.
What is genetics?
Genetics is the study of our genes. Genes are the basic “instruction books” for the cells that make up our body. All genes are made of DNA. The complete set of DNA in your body, including all its genes, is called your genome. Variations in the genome explain some of the physical differences between people. They also partly explain why some develop diseases like cancer, diabetes, or kidney disease, while others do not.
Researchers can compare the genes of people who have kidney and other diseases to the genes of people who are healthy. These differences can help researchers learn how to make new medicines and treatments for people with kidney disease and other conditions.
How can genetics help people with kidney disease and other diseases?
Did you ever play “Find the Differences” in kids’ magazines as a child? Likewise, researchers can compare the DNA from people with certain diseases with the DNA of people who do not have those diseases. Small differences in DNA are often clues that help us learn more about kidney disease and other diseases. This important information can improve the diagnosis and treatment of disease.
Why would I join My Reason?
Everyone’s information — their DNA, health history, and life journey — is different and valuable. For this research to work, researchers need lots of information from hundreds of thousands of people. People with kidney disease and other diseases. Relatives of people affected by these diseases. And people who have no personal or family history of these diseases. Everyone has unique differences in their DNA, their medical history, and their life journeys. It is your uniqueness and your story that make your contribution to this type of research so valuable. Just by sharing your DNA and
information about your medical history, you can help improve the diagnosis and medical treatment of people all over the world who are impacted by these diseases. Adding up many people’s stories may help unlock better health for generations to come.
Why help? Different people have different reasons. Maybe you want to help others live healthier lives. By taking this first step, you can make a difference!
Will I learn about any genetic variants found in my own DNA?
At this time, the My Reason research program will not provide you with your DNA sequence or information about your individual genetic results or the results of any studies using your information. If this does become a possibility in the future, you will be contacted by the My Reason research program with more details.
Kidney disease has been underrepresented in drug research. In fact, over the last 15 years, it has only made up a small percentage of clinical trials (clinical trials help develop new treatments for patients). My Reason provides information to researchers to find better treatments for kidney disease and other conditions.