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Considering Participation in a Clinical Trial

Researchers Discuss

This video presents interviews with experts on minority involvement in clinical trials. These include Dorothy Edwards, PhD, Dawn O. Kleindorfer, M.D., Alexander Dromerick, M.D., Jose G. Romano, M.D., Daniel Woo, and M.D., Kathryn France, R.N., P.H.N., C.C.R.C., C.C.R.A

S1 00:05 If you read in the newspaper that this new drug got approved and it's saving lives or it's helping people with heart failure, those discoveries come from clinical trials and they come from research.

S2 00:16 Because if we knew what the answer was, we would just give you the correct treatment in this particular situation, but what we don't know which is better. That's why we study to find out.

S3 00:25 We have lots of different things that we want to learn about and we use the terminology clinical trial for the way that we test some to make sure that they work and to make sure that they don't hurt people in the process.

S4 00:38 It's very important that all segments of the community get involved in these trials so we can see if these drugs really work.

S5 00:45 The reason you would want to participate is because first of all, that's how everybody's medical care gets better.

S6 00:51 You don't know whether it's going to help you and we should be really honest in telling you that that's why we're doing the study.

S7 00:57 The other thing I think that's really important is understanding the study that we're talking about and fully asking enough questions of the person who's talking to you about the study.

S8 01:08 There are some really good questions that you should-- everybody should ask and investigate. Basically, what are you doing, why are you doing it, how are you going to do it, and are you going to tell me what the findings are once you finished your study because I want to know?

S9 01:24 Ask all the questions you want to ask. Ask every single question. You won't think of them in front of me or in front of the research coordinator. Write them down, ask your primary care doctor. Be happy to talk to your primary care doctor or that family member who's in healthcare.

S10 01:39 If you don't understand the doctor and the doctor won't explain to you, don't participate in the study. You should not go with something that you've not been fully informed of.

S11 01:47 The number one issue for all people involved in the clinical trial is safety. Is this treatment safe for me?

S12 01:57 Ask them, "What are the risks for being in the study?" That's an important part of understanding any kind of trial that you're talking about.

S13 02:04 What are the risks of participating, what are the risks of not participating based on my condition?

S14 02:09 One of the things that we take very seriously is privacy.

S15 02:13 For medical research, nobody is interested in your name or trying to trace you down for something personal, but rather, they just want the numbers and the data about what happened to someone like you.

S16 02:27 We don't share your information with your employer, we don't share with billing agencies, or credit agencies, or collection agencies. We don't share with your insurance company. We don't share with the police, or parole officers, or anybody like that. We keep it private and there are legal protections around that that allow us to do that.

S17 02:46 We're giving you informed consent. We want you to be informed during the entire process. Also, we want to incorporate your family and your loved ones in the entire process of the study.

S18 02:58 If you decide to join the clinical trial that I'm working on, I view you as my partner in this.

S19 03:06 That's when it's going to be a good decision for you to be in a trial.

S20 03:10 A clinical trial or participating in a research project is probably the last thing in the world you want to think of. But here's why it's important, we need to make sure that the treatments that we have work for everybody.

S21 03:25 You know somebody who's had a stroke. You know somebody who's got memory loss as they're aging. This affects the people that matter to you and it might affect you yourself if it hasn't already affected you.

S22 03:36 If your ethnic group or your race is not included in studies, then we don't know if it works for you.

S23 03:43 The things that you're receiving today by the way, we are able to do because of prior generations' participation into research study.

S24 03:50 I think it's really important to understand what you're being asked to do and I think it's really important to have support from your family and friends in doing it.

S25 03:58 Please consider being in this study and making sure that we have enough people like you so that we can understand if it works for you.

S26 04:06 The problems are big. We don't have the answers yet. We need to find the answers and we can't find the answers without working together to solve the problems.

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