Why Participate in a Clinical Trial?

Overview

Without clinical trials, there can be no better treatments, no prevention and no cure for Alzheimer's disease. Scientists work constantly to find enhanced ways to treat diseases, but improved treatments can never become a reality without testing in clinical trials with human volunteers.

Individuals living with dementia, caregivers and healthy volunteers without dementia are urgently needed to participate in hundreds of actively enrolling clinical trials focused on Alzheimer's and other dementia. Recruiting and retaining trial participants is now the greatest obstacle, other than funding, to developing the next generation of Alzheimer's treatments.

By participating in clinical research, you can help to accelerate progress and provide valuable insight into potential treatments and methods of prevention. Get started with Alzheimer’s Association TrialMatch®, a free, easy-to-use clinical studies matching service that generates customized lists of studies based on user-provided information.

Benefits of participating in clinical trials

• Provides hope for people living with Alzheimer’s, their families and future
  generations.
• Enables people living with the disease to play a more active role in their own
  health care.
• Gives access to potential treatments before they are widely available.
• Offers expert medical care at leading health care facilities — often free of cost
  — while participating in important medical research.

Risks of participation

Patient safety is the most important aspect of every Alzheimer's clinical trial. The procedures for each study are reviewed by an expert board not directly involved in the trial, helping ensure that patient safety is protected.

However, there are risks to clinical trials, including:

• Unpleasant or even serious side effects related to the potential treatments being studied.
• Ineffective experimental treatments.

Details of risks related to participation in the clinical study are spelled out in the consent form participants (or their proxies) sign when they agree to participate.

All clinical trials end, and the early termination of a trial could cause strong emotions in participants. If a trial ends early because of positive results, you may feel relieved or satisfied; if a trial ends early due to unfavorable results or safety concerns, you may feel sad, disappointed, afraid, vulnerable or worried about what will happen next. It’s important to understand that researchers have gathered important data even if the results aren’t positive.

Reasons for optimism

No new treatment advances to the clinical testing phase unless there is strong evidence indicating it will be as effective as, or more effective than, currently available therapies. Every clinical trial contributes valuable knowledge, whether or not the treatment works as hoped.

Participating in clinical studies gives us optimism for today and promise for the future. They provide many participants with access to cutting-edge treatments and expert medical care. And some day they will lead us to the end of Alzheimer’s.

Participants receive a high standard of care

All participants receive regular care related to the trial and opportunities to talk to clinical trial staff. Research shows that people living with the disease who are involved in clinical trials tend to do somewhat 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.