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Volunteering for Alzheimer's Research

From , former About.com Guide

Updated: December 10, 2005

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12 Issues to consider about Alzheimer's research

Anybody who has been either diagnosed with Alzheimer's or is caring for someone with this degenerative disease hopes that a drug will come along that makes a big difference. For that to happen drug companies must develop and test their products on human volunteers who have Alzheimers. Volunteers make a brave contribution to medical knowledge. It is important that volunteers and their relatives understand the potential risks, the study requirements, results, as well as the potential for possible improvements.

Information volunteers need to Consider

  • Anyone with severe impairments has little chance of benefit

  • People in the early stages of Alzheimer's may experience no improvement, little improvement, or they may get substantial improvement.

  • The drugs may cause deterioration in a persons condition

  • People taking part in the research are not usually told if the medication they are taking is the treatment medication or a placebo (an inactive substance) A placebo has to be given to a percentage of people within the study group so that a comparison can be made with any benefits of the drug under review.
  • Important-Find out:

  • Find out the purpose and rationale of the study

  • Find out about potential side effects

  • Find out about expenses that can be incurred taking part in the study and who pays them

  • Check out who is conducting the study and how they propose carrying it out. The researcher's credentials are very important.

  • Written informed consent from volunteers must always be sought

  • Find out about the safety, dosage and method of administration of the drug

  • Make a judgement on the researchers attitude to the participant in the study and to their relatives before committing to the study.

  • Find out about what safeguards are in place to protect yourself or your loved one. A recent study on a possible Alzheimer's vaccine by Elan Corporation, and Wyeth is a good example of good practice. Studies showed that although there did seemed to be potential benefits a few volunteers experienced brain swelling. When this was detected the plug was pulled and the study stopped. Although this drug trial was stopped the research findings may still be useful in the future. Volunteering for research into Alzheimer's disease makes a great contribution to the body of knowledge and will lead in the future to more effective treatments.
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