Read about what’s new with the Biobank, what we’re doing and how you can become involved.
Over 100,000 people have joined the Biobank and we’ve collected over 50,000 samples! Our participants represent a diverse group from across the entire UCHealth system.
That’s why sometimes the same medical treatment may work for one person, but not for another. Every one of us is different; but we don’t yet know enough about those differences to fully understand how they affect our health or cause us to have diseases.
The Colorado Center for Personalized Medicine (CCPM) is hard at work carrying out research into how differences among people influence health and disease. However, we need your help.
At the heart of our research efforts is the CCPM Biobank where we collect, store, process, and test biological samples. The samples and information about the people who donate the samples are used for research and clinical genetic testing. These clinical genetic test results may be helpful to you and your health care providers.
We are asking patients at UCHealth and people in the community to be part of the Biobank. If you decide to take part, we will take a blood sample from you next time you have blood draw in one of our UCHealth clinics. We also look at your health information found in your medical record.
We aim to make research studies available to everyone, not just those with certain conditions or diseases. Common diseases and treatments need more research, and for that, we need you to take part and to donate your unique sample—and thousands of others—to continue to make discoveries that will help us understand why some people get diseases and why some treatments work well for certain people.
The more samples we collect, the more discoveries we can make that we hope will lead to improvements in healthcare delivery. By being part of this important research, you can help us make discoveries that could lead to more personalized medicine.
The Biobank is also able to return some clinical genetic test results to participants. These clinical genetic test results may be helpful to you and your healthcare providers. Some types of results may be returned directly to your medical record, and for others, you may be contacted first. The information may include:
For more information about results, please visit our Return of Results page.
We are recruiting and collecting samples from patients at UCHealth hospitals and clinics to learn how differences between people can affect health and disease. Learning more about this could, in the future, help us make discoveries that could improve healthcare for everyone.
This is a research program so the benefit is to help researchers understand how differences among people, such as in their genetic information, affect health, and risk of disease.
When we analyze your sample, we may learn something that is medically relevant for you. If we believe that the information is of medical importance, we will ask your permission to share this information with you. We cannot guarantee that we will find such information to give to you.
In the future, we also hope to be able to return information on your genetic ancestry, if you want it.
We take a blood sample from you so that we can extract the DNA (deoxyribonucleic acid) from it. DNA is how people store information we inherit from our parents; that information directs how we grow and develop. The DNA information is contained in pieces, called genes. We analyze the DNA to understand how peoples’ genetic information differs. We also store some of the sample for future research. We hope to make new discoveries that will improve our understanding of disease and lead to new diagnoses and treatments.
There are three ways we could collect a blood sample from you. We may use a leftover sample from a clinical test, we may get an additional tube when your physician orders a clinical test, or we may ask you for a research specific sample.
Research can take a long time; therefore, we cannot guarantee that we will find information in your sample to return to you. As more samples are processed and genotyping is completed, the Biobank may find information that is medically important for some participants. This information is about genetic variations or changes in DNA that may affect how a person reacts to certain types of medications or that may increase risk of certain diseases, such as cancer or heart disease. For many of these diseases, there are medical options to reduce risk or manage the effects of disease.
If we learn something about your sample, such as information on your risk of certain diseases or health conditions, how you may respond to medications or your risk of being a carrier of certain diseases, we may be able to return this to you. We will ask your permission first before returning any information to you. However, not everyone will have this information, so we cannot guarantee that everyone will receive results
If you have further questions about this study, please call the Biobank at 303-724-9944 or email us at CCPM-Biobank@ucdenver.edu. You can also reach out to us using the contact form on this website.
If you have questions about your rights as a research subject or the conduct of this study, please contact the Colorado Multiple Institutional Review Board (COMIRB) at 303-724-1055.
We will use your samples and health information for all types of research, including looking at your genetic information. Types of research that may be done include looking for medically important genetic changes and analyzing your genetic ancestry.
There are three types of results we may be able to return to participants.
Remember, we cannot guarantee that everyone will receive results. If we do not find any results to return to you, this does not mean that you will not develop a disease or health problem
Not everyone will receive results because, for example, we may find nothing to return. This is a research project to make discoveries about health and risk of disease. We have only recently started processing the donated samples and are working on ways, that if we do find medically important results, to return these to individual participants.
As you can imagine, building the infrastructure to return results to participants takes time and with over 60,000 people now in the Biobank, we are working on the best way to return any results we may find.
We may find something when we analyze your sample that may affect your care or treatment. However, nothing will be placed in your medical records without your consent. It is important to remember that this study is not a replacement for standard clinical testing that you and your physician may decide is appropriate for you.
We are not related to 23 & me. The Colorado Center for Personalized Medicine has some very clever scientists that study population genetics and we hope that we will be able to return ancestry information to those participants that want to receive it.
You will not receive payment for being part of this research study and you will not have to pay anything to be in this study. You and your insurance will not be billed for donating a sample to the Biobank.
We hope to update participants on what type of general research is taking place in the future but will not be able to tell participants about which studies their individual sample or data is being used for. Participants will not be able to choose which studies their sample or information is used for.
No. A large amount of information is generated when we process your sample. The vast majority of it is information that is only valuable for research purposes at this time. Because of the data size and the unknown impact, we are not returning data to participants at this time.
We get your sample by either an additional blood sample collection when you are having a clinical blood draw or by accessing a leftover sample from routine testing. As with any clinical sample, the tubes has some personal details such as your name and date of birth in order to identify the sample. When the sample is used for research, it is given a unique code and only the Biobank is able to link that to your information. Researchers outside the Biobank will not have access to information that can directly identify you, such as your name, address, or medical record number.
If you decide to be in this study, there is no limit on the length of time we will store your samples and health information. We may keep using them for research unless you decide to stop participating or we close the Biobank.
We take the protection of your privacy very seriously. We will take all reasonable steps to keep your information private. All information used by this study will be protected using secure computers and locked files, so that only authorized people can access it.
Whenever possible, donated samples and your health information will be stored with a code and not your name, social security number, or other easily identifiable information. However, because some information such as your genetic information is unique to you, there is a small chance that someone could trace it back to you. The risk of this happening is very small.
A federal law, called the Genetic Information Non-discrimination Act (GINA) generally makes it illegal for health insurance companies, group health plans, and most employers to discriminate against you based on your genetic information. In Colorado, additional genetic protection laws prohibit denial of health care insurance, Medicare supplement insurance coverage, group disability insurance, or long-term care insurance coverage based on your genetic information.
As we collect more samples, we plan to give back information on the progress of the Biobank, the work of the Colorado Center for Personalized Medicine, and our research findings through newsletters[LINK] and on this website [LINK].
The Biobank has now consented over 60,000 people to take part in the study. The more people that take part, the more discoveries we can make. We have been working hard to expand enrollment by using UCHealth’s My Health Connection as an online consenting platform.
We have also had our Biobank Laboratory licensed and inspected to process clinical samples and begun to process the samples we have collected.
You can withdraw from the Biobank clinical research study at any time and you do not have to give a reason. If you decide to withdraw, please call the Biobank at 303-724-9944 or fill out the form here [LINK]. On notification of withdrawal, any unused samples will be destroyed. However, any information or samples already being used for research will continue to be used.
Study Title: Colorado Center for Personalized Medicine (CCPM) Biobank Research Study
COMIRB#: 15-0461 PI: Dr. Kathleen C. Barnes: Director, CCPM