This article is the third installment in the “Ask Dr. Kevin” series, brought to you by Pfizer Rare Disease in collaboration with the NNPA to increase understanding of sickle cell disease.
Clinical trials are critical to bringing new medicines to people who need them, particularly those affected by conditions with limited treatment options, such as sickle cell disease (SCD). These studies, which determine the safety and effectiveness of new investigational treatments, rely on the participation of volunteers. Without enough volunteers, researchers are unable to complete the research required by the U.S. Food and Drug Administration (FDA) to evaluate if a new drug should be made available to patients. Therefore, the only way to get any drug approved by the FDA and accessible to patients in need is through clinical trials.
Unfortunately, finding enough patient volunteers is often a challenge in conducting clinical trials, and this has been particularly true for trials exploring new treatment options for SCD, which occurs in one out of every 365 African American births. Although African Americans make up 12 percent of the U.S. population, they comprise only 5 percent of clinical trial participants overall.
Fear and misunderstanding about clinical trials likely contribute to the difficulty of recruiting participants. Recently, Pfizer and the NNPA collaborated on a national poll consisting of 741 participants to learn more about perceptions of SCD and clinical trials in the African American community. A majority of respondents indicated a willingness to participate in future clinical trials for SCD, if given appropriate knowledge and recommendations from health care professionals. Of those who indicated that they would not participate in clinical trials, ‘fear of uncertainties’ was the most cited reason.
To help address some of these uncertainties, I’m here to answer the most common questions about clinical trials. It is my hope that this information will help you make an informed decision should you or a loved one choose to participate in a clinical trial in the future.