Frequently Asked Questions
- What is the Conquering Diseases Clinical Research Volunteer program?
- How can I participate?
- How will my privacy be protected with each of these options?
- Will the 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?
Conquering Diseases is a research project that hopes to discover the keys to better health in our community. Through the Conquering Diseases Research Volunteer program, we help connect the community members who want to volunteer for clinical research studies to clinical trials that are of interest to them. The decision to participate – or not - will not change any care and treatment received here at UMass Memorial Health Care, now or in the future.
When you come to UMass Memorial Health Care for an appointment or just to visit, you can drop by the Conquering Diseases suite at the University Campus to enroll as a potential research volunteer. During the enrollment process you will complete a form which lists your contact information and the kinds of clinical research you are interested in. You will also sign an Informed Consent which gives Conquering Diseases staff permission to share your contact information with UMass researchers who have a study you may want to join.
We release your contact information only to UMass researchers who have Institutional Review Board (IRB) approval. The UMass Medical School IRB reviews all UMass clinical studies to ensure that the studies are safe and study participant’s privacy and health information is protected.
Becoming a Conquering Diseases Research volunteer is a pathway to enrolling in a specific study. Some studies may result in a direct benefit for you and others will not. In any study, you have the benefit of knowing that you are doing something to help others, or yourself, in the future. Whether or not there is a direct benefit to you, your volunteering may help others in our community as doctors and scientists learn more about health and how to prevent and better treat diseases.
Like any research project, Conquering Diseases program staff invites you to read, have 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 and be sure you understand everything in the consent before you make a choice. This is called informed consent – like any research project, the Conquering Diseases program believes it is important that you have full understanding before you volunteer.
The consent you sign to enroll in the Clinical Research Volunteer Registry does not expire and does not have an end date. However, you can change your mind about participating as a volunteer and can withdraw your consent anytime by emailing or calling our staff.
The Conquering Diseases program staff keeps any information collected about you as confidential as possible. Information about your participation is limited to those with a need to know. We encourage you to tell your doctor of your participation and discuss opportunities for clinical research now or in the future.
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 UMassMemorial Health Care 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.
Yes, we welcome you to consider participating any time, now or in the future. This project is voluntary and is totally separate from your care and treatment. You can decide at a future date and volunteer when you are ready.
Yes - whether or not you participate - we invite you to review our website for current information about the Conquering Diseases project. We will periodically publish interesting information about currently recruiting studies and results from completed research studies. We want you to know as much as possible, and feel free to also call or email us for more information about clinical research opportunities at the UMass Medical School and UMass Memorial Health Care.