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Alzheimer's Disease Clinical Trials – Myths vs. Facts


MYTH

FACT

There are already plenty of volunteers. They don't need me to participate.

New treatments for Alzheimer's disease cannot be discovered without clinical trials, and many more participants are needed. Today, at least 50,000 volunteers, both with and without Alzheimer's, are urgently needed to participate.1 More than 100 Alzheimer's clinical studies are now recruiting participants.

It's too late – the disease is too advanced to participate in a research study.

There are clinical studies that work with people in every stage of Alzheimer's. Participating in a trial could have a potentially measurable impact on the disease.1

Clinical trials are dangerous, because they use new and unproven methods and medications.

Clinical trials are experiments and as a result there is always some level of risk involved. However, the ethical and legal codes that govern medical practice also apply to clinical trials. In addition, most large clinical trials are federally regulated with built in safeguards to protect the participants.5 However, there may be unpleasant, serious or even life-threatening side effects to experimental treatment. Participants should discuss and understand any side effects with their doctor, and if necessary, may withdraw at any time.

If I join a clinical trial, I won't receive the same quality of care that I currently have with my doctor.

 

Participants in clinical trials receive a high standard of care. All participants have the opportunity to talk with study staff, and should also continue care with their doctors.

Research shows that people involved in clinical studies do somewhat better than people in a similar stage of their disease who are not enrolled, regardless of whether the experimental treatment works. This may be due to the general high quality of care provided during clinical studies.1

If I join a treatment clinical trial, I will get a placebo, and I don't want that.

 

In a randomized clinical trial, it is often the case that some of the participants get a placebo as part of the trial design. Each potential participant should consider his or her comfort level in not knowing whether they will receive the experimental treatment or a placebo before deciding to join a trial.2

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There may be painful or invasive procedures as part of the clinical trial.

 

Each potential clinical trial participant should inquire about the trial design and the potential treatments and procedures they may receive during the study before deciding whether to join a trial. Volunteers can withdraw from a study at any time they or their physician feels it is in their best interest.3

It costs too much to participate in a clinical trial.

 

Every clinical trial is designed differently. Some clinical trials reimburse associated travel costs, and some may provide compensation to participants. Still, there may be costs associated with participating, so contact your trial site for information pertaining to a particular trial of interest.

I am going to be rejected from a clinical trial because I have another disease or condition, too.

 

Some people with Alzheimer's disease also have other chronic medical conditions, such as heart disease, diabetes and cancer.4 However, they may still qualify for a clinical trial. Each clinical study has different inclusion and exclusion criteria. Check with the trial site, or Alzheimer's Association TrialMatch® for more details.

If there is a clinical trial that could help me, my doctor will tell me about it.

 

More than 100 Alzheimer's clinical studies are currently taking place.2 Your physician may be unaware of all the research studies in your area. For the most up-to-date information about clinical trials in Alzheimer's disease, visit Alzheimer's Association TrialMatch, at www.alz.org/TrialMatch or (800) 272-3900.

References

  1. Alzheimer's Association. Clinical Studies. Accessed on April 8, 2010: http://www.alz.org/alzheimers_disease_clinical_studies.asp.
  2. National Institute on Aging. National Institutes of Health. U.S. Department of Health and Human Services. Participating in Alzheimer's Disease Clinical Trials and Studies. September 2009; 09-7484. Accessed on April 8, 2010: http://www.nia.nih.gov/Alzheimers/Publications/trials-studies.htm.
  3. National Institutes of Health, ClinicalTrials.gov, Understanding Clinical Trials, Accessed on April 8, 2010: http://clinicaltrials.gov/ct2/info/understand.
  4. Alzheimer's Association. 2010 Alzheimer's Disease Facts and Figures. Alzheimer's & Dementia; vol. 6. Accessed on April 20, 2010: http://www.alz.org/documents_custom/report_alzfactsfigures2010.pdf.
  5. ClinicalTrials.Gov, a service of the U.S. National Institutes of Health: http://clinicaltrials.gov/ct2/info/understand#Q07


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