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BE WELL INFORMED

If you are considering enrolling in a medical research project, there are many things to think about. Understanding the basics of medical research and the process can help you make a more informed decision. The following information will help get you started.

What is medical research?

Medical research is research conducted to aid the body of knowledge in the field of medicine. This can be divided into two general categories: new treatments that are tested in clinical trials, and all other research contributing to the development of new treatments. EPGP is a genome research study, and investigators will be looking for patterns in DNA that contribute to the development of epilepsy.

The decision to participate in medical research is a very personal one. However, there are guidelines to protect study participants. Research in humans is permitted only in volunteers who have been briefed about both the potential benefits and hazards of trial participation. This is called informed consent. It is the responsibility of the trial’s medical team to explain the risks to potential study participants.

Before enrolling in a research study, it is important to fully understand what participation will entail. The informed consent statement has detailed information about the study, including the length of the study, the number of visits required, medical procedures and medications included. It also provides expected outcomes, potential benefits and possible risks. After receiving this information, the patient should discuss trial participation with his or her physician and family. Volunteers may leave a study at any time.

In order to help patients make this very important decision, the NIH developed the following set of questions. The trial coordinator and your personal physician can help you answer these questions. You should feel comfortable with your answers before enrolling in any study:

  • What is the purpose of the study?
  • What is required of me?
  • What is my role in the study? Am I a healthy volunteer or a patient volunteer?
  • Will the study directly benefit me?
  • Will the study benefit others?
  • Are there risks? If so, what are they and what are the chances that they will occur?
  • What discomforts are involved?
  • What is the total time involved?
  • Are there other inconveniences?
  • Have I discussed participation in the study with those who are important to me, such as family and friends?
  • Do I wish to participate in this study?

For more information

The following sites contain additional information that may be of interest if you are considering participating in a medical research study:

Understanding Clinical Trials - An Introduction to Clinical Trials provided by the National Institutes of Health

Your rights and informed consent - WebMD's information on patients' rights on deciding to participate in a clinical trial.

 
 
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