Why You or a Family Member Should Join an Alzheimer's Study

Giving informed consent may be as simple as verbally agreeing to answer some questions.  More commonly, especially if the study involves any significant risk, the subject is asked to sign a consent form.  A consent form is a document that is designed to explain the research study, inform the subject of his or her role in the study (things such as time commitments), inform the subject about the potential risks and benefits of the study, inform the subject about who the researchers are that are responsible for the study, and inform the subject how to contact someone from the study and inform the subject as to who oversees the research, including its potential risks and benefits.

Only after giving informed consent can a subject enter into a study.  But, you ask, how can you know if you want to be in a study to get to the point of asking about the risks and benefits?  Getting to the point of asking is an individualistic thing.  Some people are aware of research from friends, support groups, newspapers, the internet or some other source. If, for their personal reasons, they desire to be involved in the research, they will commonly seek out the research opportunities.  They might do this out of interest in science; desire to possibly help themselves or others. These people then seek out opportunities for being in research.  Other possible subjects may to be in a medical situation, such as at our university, that offers to include them (the potential subjects) the opportunity to join the research.  No matter which situation, the patients still have the same opportunity for and quality of medical care whether they enter the study or not.

Therefore, patients enter into a research studies because they are informed about them; have the opportunities to enter them and the desire to be a part of this medical research process.

In my next blog I will cover another important aspect of this process.  What are the safeguards that are in place to protect the subjects?  Although the consent form is supposed to be written at an eighth grade level, it frequently many pages in length and not always as clear as we might like.  Therefore, it is important for you to know that the researcher does not just “whip out a consent form” for potential subject to sign.  Instead there is a complex process that occurs before, during and after the consent is signed.  This process helps ensure that the research is being done safely and ethically. We will cover this next time.