Some Thoughts on Participating in a Clinical Trial

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Donna Mae Scheib

Some Thoughts on Participating in a Clinical Trial

Posted by Donna Mae Scheib on January 09, 2019

Some Thoughts on Participating in a Clinical Trial

“Don't just hope for a cure. Help us find one. Volunteer for a clinical trial.”− Alzheimer’s Association

Did you know that clinical research can help to further the progress of potential diagnoses, treatments, and methods of the prevention for Alzheimer’s? Even though scientists are working to find ways to treat this disease, testing of the improved methods is necessary through clinical trials with humans as volunteers. Every clinical trial offers more knowledge and insights to the area of study even if the trial is not successful. Thanks to the thousands of volunteers thus far, progress is being made in the 21st-century regarding Alzheimer’s disease.

Who is needed?

Those individuals who have dementia or are at higher risks of developing it, caregivers of dementia patients, and also additional healthy individuals who are not diagnosed with the disease are encouraged to participate in the more than 250 ongoing clinical trials that focus on Alzheimer’s and other dementias. These trials include both pharmacological (drugs) and non-pharmacological (non-drugs) studies at various sites throughout the United States. There are also online studies.

How can you learn more about clinical trials?

You can check out Trial Match (email TrialMatch@alz.org or call 800-272-3900, press 1 for clinical trials), a no-cost user-friendly clinical study matching service of the Alzheimer’s Association. Trial Match customizes a list of potential study matches selected from ClinicalTrials.gov based on the information that you provide. All of the shared information is kept confidential. You can elect to opt in or out of receiving future email notifications as new studies are available. This site (ClinicalTrials.gov) is a government website that updates information about federally and privately supported clinical research. It also details the purpose of each trial, outlines who can participate, cites the locations of the studies, and lists contact information for you to get more details about the study. After the list of study matches is generated and sent to you, you can review the results and determine if you want to contact any of the studies for more information or sign up to participate.

What are the benefits of such a trial?

  • Be an active participant in your own health care
  • Become more cognizant of Alzheimer’s and other dementias
  • Gain access to potential treatments before they are ready for public use
  • Receive quality medical care at top-notch healthcare facilities (often at zero cost) throughout the duration of the research study
  • Help medical researchers, scientists, and society in general by contributing to Alzheimer’s and other dementia research

Are there any risks associated with the research studies?

The procedures of each study are reviewed by competent committee members to ensure the highest element of patient safety before the study commences. If any side effects are suspected, these will be explained to you up front as well as the suggested remedies that are offered should such a side effect result. You will be monitored closely throughout the study and if any concerns arise, these will be dealt with immediately and with your health at the forefront of any decisions (to discontinue the study, to take measures to alleviate the side effect, etc.). In addition, the experimental treatment may not work for everyone. Before participating, you must give written permission and are required to meet specific qualifications. After selection, the participants are closely-monitored for their individual health and safety throughout the trial period (as mentioned above) and often for several years beyond the clinical trial period as well. Any results of the clinical trial are shared with the participants.

Your action is needed!

The Alzheimer’s Association Trial Match’s motto is “Don't just hope for a cure. Help us find one. Volunteer for a clinical trial.” Why not consider reading more about playing an active role in a clinical trial and/or sharing this information with those you know may also be interested? Through collective action, a cure for Alzheimer’s can be found.

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