According to the Alzheimer’s Association, more than 6 million Americans suffer from Alzheimer’s and by 2050, this number is projected to rise to nearly 13 million! Currently, 10 percent of the 6 million Americans that have Alzheimer’s live in Florida! It is estimated that Sumter County alone (where I live) has over 10,000 individuals that have been diagnosed with Alzheimer’s. Alzheimer’s is the sixth leading cause of death in the U.S. and is the most common form of dementia in 60-80 percent of all diagnosed cases.
The only way better treatments, prevention and a cure for Alzheimer’s can be found will be through clinical trials with human volunteers! Clinical trials are research studies conducted with human volunteers to determine whether treatments are safe and effective. Scientists work tirelessly to find ways to treat diseases, but improved treatments can never become a reality without these clinical trials.
Clinical trials are the best way for researchers to collect reliable data to improve existing drugs and to understand new drugs, including their effectiveness as treatments and any potential side effects.
According to the National Institute of Health, individuals living with dementia, caregivers, and healthy volunteers without dementia are currently needed to participate in hundreds of clinical trials focused on Alzheimer’s and other types of dementia. Recruiting and retaining trial participants is now the greatest obstacle, other than funding, to developing the next generation of Alzheimer’s treatments.
The benefits of participating in an Alzheimer’s clinical trial include:
- Becoming a part of important medical research.
- Helping accelerate the progress and providing valuable insight into potential treatments and methods of prevention.
- Having the possibility of receiving access to an investigational medication not currently available through a prescription.
- Receiving consistent medical care from an expert medical team and the opportunity to gain access to education and community resources that may not have otherwise been available.
- Providing hope for individuals living with Alzheimer’s and helping people that will be diagnosed in the future by contributing to the advancement of standards of care and treatment.
When wondering about the risks, patient safety is the most important aspect of every Alzheimer’s clinical trial. The procedures for each clinical trial study are reviewed by an expert board helping to ensure that patient safety is protected.
However, there are risks to clinical trials, including but not limited to:
- Side effects related to the potential treatments being studied.
- Ineffective experimental treatments.
Details of risks related to participation in a clinical trial will always be spelled out in a consent form that participants (or their proxies) sign when they agree to participate. It is important to remember that researchers gather important data even if the treatment/results aren’t positive.
Participating in a clinical trial is not meant for everyone! No one can predict what will happen with a clinical trial study or how it might affect you. An individual must weigh the advantages against the possible risks and level of commitment.
According to the Alzheimer’s Association, research shows that people living with the disease who are involved in clinical trials tend to do better than people in a similar stage of their disease who are not enrolled in clinical trials, regardless of whether the experimental treatment works. Scientists believe this advantage may be due to the general high quality of care provided during clinical trials.
Questions that should be asked when meeting with research doctors and/or team members before participating in a clinical trial for Alzheimer’s should include at least the following:
- Do I have to pay to participate in a clinical trial?
- Do I need to have medical insurance to participate in a clinical trial?
- Am I eligible to join this clinical trial and how could it help me?
- What is the purpose of this clinical trial?
- What phase is this clinical trial in and what does that mean?
- Have there been other trials similar to this one?
- Will I find out about the results of the clinical trial?
- If I benefit from this therapy, will I be allowed to continue receiving it after the trial ends?
- What are the possible risks?
- How will the trial affect my daily life? How often will I have to come to the clinic for treatment?
- Will I have to change my daily activities or my diet?
After careful consideration, if an individual decides to participate in a clinical trial, that individual will be a major part of shaping more effective treatments and standards of care for generations to come.
There are several research entities with opportunities to participate in Alzheimer’s clinical research trials in The Villages.
Those include entities such as Charter Research which recently relocated to an office at Lake Sumter Landing. Their website form is:
The phone number For Charter Research is 352-441-2000.
In addition, UF Health Precision Research Center in The Villages is seeking individuals to participate. Their website is:
The phone number for UF Health Precision Research Center is 352-247-2493.
Carol Ann Wolf, MSH-NHA-CDP is a Village of Hemingway resident. She is a retired healthcare executive that volunteers in a variety of different areas within The Villages relating to dementia, including community education. She is on the Board of Directors for the non-profit Our Moment Cafe, Inc. which provides social engagement (i.e. memory cafes), education, and support for caregivers and their loved ones with Alzheimer’s or dementia.