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Concerns About Participating in a Clinical Trial
Questions and Concerns:
For people having to deal with the symptoms of a specific medical ailment, participating in a clinical trial is often thought of as the last recourse, and sometimes it isn’t even considered.
After analyzing the data compiled by ClinicalTrials.gov, Lilly Clinical Open Innovation published their findings as to why people did not participate in clinical trials. According to their analysis, 84% of cancer patients were not even aware of clinical trials when they were determining their best treatment options. In a survey of people who did participate in a study, 95% said that they would potentially participate in another in the future. (1)
Frequently, people have some pressing, unanswered questions or concerns about participation in a trial:
- Aren’t there already enough people participating? Why would they want me? The reality is that each person who participates in a clinical trial not only has potential to find a solution to their own ailment, but also is providing valuable data towards advancements in treatments or a cure; this helps everyone with the same condition. Interestingly, according to information compiled by The Center for Information and Study on Clinical Research Participation, only 15% of study participants surveyed stated that they enrolled for their own benefit; 33% said that they participated to provide advances to medicine, and 29% said that they wanted to help others. (2)
- I might not qualify, right? It is true that there are certain criteria which must be met in order for a potential participant to be able to enroll in a study. However, many people who might not think they’d qualify actually do. The fact is, a possible participant won’t know until being assessed.
- I’m afraid. Many people are scared of the possibility of being a guinea pig – someone that is being experimented on – or concerned that they will be someone for whom the treatment doesn’t work. Often, people are worried about going through all of the effort to participate and receiving a placebo. Still others are just generally nervous about the unknown.
Treatments have reached an advanced stage within the vetting process once they are studied in a clinical trial. While data is gathered with every participant, it all is important information in assessing the viability of a treatment.
There is always a possibility that a treatment may not be effective for an individual. However, there is also the possibility that it is!
While there are studies that contain placebos, many do not contain placebos at all. If this is a concern, ask the professionals conducting the clinical trial for more information.
It is important to learn as much as possible about a study before evaluating whether or not to participate. Acquiring information can provide confidence in the process and the medical team leading the clinical trial, and help a participant manage their expectations.
- How can this help when I’ve already tried everything? For those suffering from a specific condition for a while, the prospect of putting forth effort for yet another possible solution can seem fruitless. If these same people were actually able to find a treatment that helped their symptoms, it is safe to say that few wouldn’t be very relieved. People who participate in clinical trials could be the first to experience the benefits from a new treatment.
- Participation doesn’t fit with my schedule. While it is true that participation in a clinical trial takes time, each individual should evaluate whether the benefits could outweigh the effort it might take to manipulate a schedule to be involved.
If you are suffering from a medical condition, have tried traditional treatments and have not experienced benefits, learning about a clinical trial in your area for your condition is worth investigation. Every participant can help advance medical knowledge… and just might provide a treatment that works for you!
Learn more about the basics of clinical trials from the NIH:
- The Basics - NIH Clinical Research Trials and You - National Institutes of Health (NIH)
Information about participating in a clinical trial.
(1) Lilly Clinical Open Innovation: "Patient Participation in Clinical Trials Infographic" by Jerry Matczak; 1/23/14; (https://sonoco-hr.silkroad.com/epostings/index.cfm?fuseaction=app.dspjob&jobid=1707&company_id=16154&version=1&jobBoardId=1112)
(2) The Center for Information and Study on Clinical Research Participation: Before Participation, "Charts and Statistics: Useful Information About Clinical Research Before Participating in a Clinical Trial"; (https://www.ciscrp.org/education-center/charts-and-statistics/before-participation/)