The following is taken from Gary Barg, Editor in Chief (Mindset - Alzheimersglobalstudy.com)
Regular readers of this column have heard me talk of the concept of "malinformation." This is when what you think you know about a subject is not only wrong, but greatly distorted in a negative way. Some examples we have spoken about over the years include hospice, long term care, and especially clinical trials. Which brings me to the point of today’s communiqué.
The most important thing for any Alzheimer’s caregiver to do is to take back control from the disease through education and knowledge. Then you can begin the research process of looking into what are known as clinical trials. Unless personally touched by a major medical challenge, most people will never hear about clinical trials.
Clinical trials are often referred to by a number of other terms by the members of the medical-scientific community-- clinical study, research protocol, or clinical research are just a few examples. All terms mean the same thing…clinical trial.
Each clinical trial has its own guidelines for who can be eligible to be part of the study. In order to assure the safety of those who are about to participate in a clinical trial, the government has designed a system that requires a trial plan, known as the protocol, to first be approved. After approval, a review committee is then assigned to the clinical trial in order to continually monitor the study and ensure that participants are being protected. Alzheimer’s clinical trials are conducted under the guidance of a healthcare team. At the end of the study, the information gathered from all the
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participants is then analyzed by experts to evaluate the investigational treatment being tested in the trial.
Clinical trials are an important option to consider for your loved one living with Alzheimer’s disease, offering potential access to investigational treatments before they are approved for widespread use. However, there is no guarantee they will work and there are certain risks associated with any treatment, so it is important to ask questions about the potential risks and benefits of participating in a clinical trial before giving consent. This process is known as ‘informed consent.’ Usually, insurance is not necessary to participate in clinical trials. All associated medical costs, and potentially travel expenses, may be covered at no cost to the patient.
Clinical trials often involve active participation of the caregiver, which can be a rewarding way for the caregiver to contribute. The specifics of what caregivers can / should do is best discussed with the study doctor.
Clinical trials are a window to new solutions for advancements in the treatment of medical conditions such as Alzheimer’s disease. As they say on television: The more you know!
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