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Volunteering For Alzheimer’s Research: Is It For You?  

by Derrick

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Participating in Alzheimer’s research is a great way to get involved in treating, preventing and potentially curing Alzheimer’s. You can take part in scientific discovery and help others live healthier lives. If you’re interested, here’s what you need to know.

Who Can Volunteer?

Although patients with Alzheimer’s can participate, you don’t need to have the condition to volunteer. You can be perfectly healthy. Clinical studies need all kinds of participants. Researchers look for diversity in the groups they choose – a mix of men and women, white participants and participants of color, etc. – to ensure adequate representation.

You might also consider participating if you have a condition that may lead to Alzheimer’s, or a family history of the disease.

What Are The Benefits?

Besides contributing to research, your participation may help any family members at risk for the disease. You get help, too. While you’re involved, skilled medical professionals monitor your health closely. You have access to treatments that may not be available to the public yet. These new treatments may be more successful.

Close involvement with the medical community means you’ll learn more about the disease and your health. You’ll also get connected to resources, like support groups.

What Are The Risks?

Since clinical research often tests new treatments, there’s always risk involved. The research team will explain possible risks and side effects of each trial so you can make a decision. Also, since the treatments are so new, participants should not expect to benefit directly from an assigned treatment or drug. They may also be part of a group that receives a placebo, or inactive treatment.

Studies involve a time commitment and regular travel to the hospital or research facility. The time commitment will vary depending on the study, from days to sometimes years. The trial may require you to have a caregiver or family member accompany you on each visit.

What Types Of Research Use Volunteers?

There are two types of clinical research (medical research involving people): clinical trials and clinical studies.

  • Clinical studies observe people in normal settings. Researchers group volunteers according to certain characteristics, collect information and track changes over time.

One Alzheimer’s-related clinical study gathered people aging normally, people with mild cognitive impairment and people with early stage Alzheimer’s. In all three groups, the research team observed brain images and biomarkers over time. The team noticed that certain changes in blood or cerebrospinal fluid might signal Alzheimer’s. Their next step is to use that knowledge to test a treatment in a clinical trial.

  • Clinical trials test interventions – drugs, new devices, and even dietary changes. Through clinical trials, doctors discover which treatments are safest and most effective.

The U.S. Food and Drug Administration (FDA) approves clinical trials for drugs after the drug has been tested safely and effectively on animals. Once the drug or treatment is approved for a trial, the trial advances through four phases to find the right dosage and watch for side effects.

More than 70 drugs are in clinical trials for Alzheimer’s disease right now, with more waiting to be approved by the FDA. That means there’s plenty of opportunity to get involved!

How Do I Find A Trial?

There are several ways to find a trial that may be right for you.

How Do I Get Involved?

  1. Contact the coordinator of the trial or study you’re interested in. They’ll ask you a few questions over the phone to determine if you meet the basic qualifications for the trial.
  2. You’ll travel to the study site, where the staff will get more information about you, and give you more details about the trial. Use this opportunity to ask any questions you have.
  3. Once you’ve agreed to participate, you’ll sign an informed consent form.
  4. You may undergo additional screenings to make sure you’re qualified.

What Happens During The Trial?

  1. You schedule a first visit (called a “baseline visit”). Doctors will conduct cognitive and physical tests.
  2. You’ll be assigned to a treatment group or a control group.
  3. You and any participating family members or caregivers follow the trial procedures.
  4. You may visit the research site for scheduled appointments, where you’ll discuss the effects of the intervention with your research team. They’ll also give you more cognitive and physical tests periodically.
  5. Report any issues, concerns, or side effects to the research team.
  6. Continue to see your regular physician throughout the trial.

Will My Safety Be Protected?

Researchers follow laws enforced by the federal government. These laws are in place to keep participants safe and information confidential. The laws ensure:

  • Your health and personal information will be kept private.
  • Every study must have Institutional Review Board (IRB) oversight. This keeps participants from being exposed to unnecessary risks.
  • If an experimental treatment is harming participants, or if it is not working, the trial will stop right away.
  • Researchers must explain details such as purpose, duration, risks and benefits to participants before they agree to join a study.

What Questions Should I Ask?

Your research team should give you enough details to make an informed decision, including information about your rights. This is called “informed consent“. When you sign the informed consent form, it means you willingly agree to participate. You are still free to withdraw from the study at any time.

With the answers to these questions and any others you may have, you can decide if the study or trial is right for you:

Can I continue treatments for Alzheimer’s and other conditions as prescribed by my regular doctor?

How will you keep my doctor informed about my participation in the trial?

Does the study compare standard and experimental treatments?

How will the trial affect my everyday activities?

If I withdraw, will this affect my normal care?

Will I learn the results of my tests? Of the study overall?

What are the chances that I will receive a placebo?

What steps ensure my privacy?

Will my expenses be reimbursed?

 

 

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