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Clinical Trials: Should I Participate?

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Dear Dr. Levister: I see there’s a clinical study about my disease -- My sister who works for a large pharmaceutical company, says more African Americans should become involved in clinical trials. Why is it important?
B.Y.

Dear B.Y.: It’s really critical for African Americans to be involved in clinical trials if we’re going to solve problems that affect us disproportionately. But it’s also critical that those clinical trials involve people from our communities, that we have a measure of control over those trials as opposed to depending upon other people. We live in a country where you can’t always trust the people in charge. It’s unfortunate, but it’s true. In the past such studies were rarely open to “minority” participation.

There are certain diseases or cultural implications that make it important for us to be involved in trials. Take something like hypertension, which disproportionately affects us. The same drugs that may be effective in one group may not be effective in another. We have differences, in terms of how we break down a drug, how long the drug stays in the system and things like that.

If you don’t have a representative number of African Americans in a clinical trial, you actually don’t know how the results apply to African Americans. Drug manufacturers are coming out with new drugs -- better drugs with fewer side effects -- and it’s important that those drugs be appropriately tested in a representative population. That means a representative number of African Americans, as well as Whites, Hispanics, Asians and others. And yes, people are actually paid when they volunteer for studies on everything from diabetes to skin cancer.

According to the National Medical Association, there are certain questions you should consider “about participating in research.” Does the study have an intervention? Do you receive a drug or treatment or surgery? If so, the informed consent form they give you will tell you what the odds are. Will you be given the new treatment versus the placebo or older treatment; how will you be assigned to the treatment or non-treatment group.

What is the compensation? If you elect to participate, select an agency known for producing certifiable culturally sensitive results. Disclose any herbal or nutritional supplements you are taking. Notify your personal doctor so he or she can know what treatment you are getting. For more information on clinical trials visit http://clinicaltrials.gov/ct/gui/.

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