Frequently Asked Questions/Answers
- What is the Conquering Diseases Biorepository project?
- How can I participate?
- How will my privacy be protected with each of these options?
- Will this Conquering Diseases project benefit me directly?
- How do I get more information or sign up for Conquering Disease?
- If I decide to participate now, can I change my mind?
- Will other people know whether or not I have signed up?
- I have heard that research centers have review boards. Has a review board approved this study?
- If I decide not to participate now in this project, can I change my mind at a future visit?
- Are there ways I can find out what is happening with this project in the future?
- Why are you collecting samples of blood or other tissues?
What is the Conquering Diseases Biorepository project?
Conquering Diseases is the name given to a research project that hopes to discover the keys to better health in our community. It works by studying the links between your blood test and your disease or health. Your decision will not change any care and treatment you receive here at UMass Memorial, now or in the future.
How can I participate?
When you come to UMass Memorial for an appointment (a wellness check-up, or to diagnose or treat a problem) you can provide a sample of blood when these same samples are being collected for care and treatment your doctor has ordered. Alternately, you can drop by the Conquering Diseases suite to donate a blood sample. Your specimens will be available for use in research studies. Your name and any identifying information will be removed. Only health information that does not identify you (for example, if you are male or female, whether you have a certain diagnosis, or your age) will be linked to your specimen.
How will my privacy be protected with each of these options?
We will remove your name and identifying information from the sample. Only health information (such as your age, diagnosis or whether you are male or female) with no links to your identifying information will be kept.
Will this Conquering Diseases project benefit me directly?
There is no direct benefit to you. However, your voluntary sample may help others in our community as doctors and scientists learn more about health and how to prevent and better treat diseases.
How do I get more information or sign up for Conquering Disease?
Like any research project, Conquering Diseases invites you to read, take time to ask questions, and then sign a consent form if you want to participate. One of our trained research staff is available to review the consent with you to make sure you understand everything in the consent before you make a choice. This is called informed consent– like any research project, Conquering Diseases thinks it is important that you have full understanding before you volunteer.
If I decide to participate now, can I change my mind?
The consent you sign for sample collection will not expire and does not have an end date. However, you can change your mind about donating samples before they are given by calling/contacting (508)856-2557. Since identifiers will be removed from your samples after they are obtained and we will not be able to identify them ever again. We cannot destroy your samples once they are collected.
Will other people know whether or not I have signed up?
The Conquering Diseases program staff keep any information collected about you as confidential as possible. Information about your participation is limited to those with a need to know. Personal identifiers will be removed from your samples after it is collected.
We encourage you to tell your doctor of your participation and discuss opportunities for clinical research now or in the future.
I have heard that research centers have review boards. Has a review board approved this study?
Yes, this research project has been reviewed and approved on two levels. First, the UMass Medical School’s Institutional Review Board (called an IRB*) has carefully reviewed this project and given its approval to invite participants. Second, the UMass Memorial privacy office (what you may hear called a HIPAA or privacy protection office) has also carefully reviewed this project and has approved it. Both the IRB and HIPAA offices will get a periodic report about this project. Any changes or additions will always require another review and re-approval.
If I decide not to participate now in this project, can I change my mind at a future visit?
Yes, we welcome you to consider participating any time in the future. This project is voluntary on your part – totally separate from your care and treatment here – and you can decide at a future date and volunteer when you are ready.
Are there ways I can find out what is happening with this project in the future?
Yes - whether or not you participate - we invite you to review our website for current information about the Conquering Diseases project. We want you to know as much as possible, and feel free to also call our central Research Volunteer information line at (508)856-2557 for more information about clinical research opportunities at UMass Medical School and UMass Memorial Medical Center.
Why are you collecting samples of blood or other tissues?
We know that health and disease can be affected by so many things – including our environment, what we eat, our activity, our family history and genetic make-up (the way certain traits or conditions are passed down in our families from one generation to another). The cells in the human body – including the parts that distinguish one individual from another, or DNA - may help us discover important clues to health and disease. It may even help us discover in the future how individuals will respond to medicines and treatment for certain conditions. As scientists and doctors learn more, having samples of blood and body tissue available for research may help us answer questions that have not even been asked yet!