How Studies Work

When you are interested in an observational study, you will usually talk to a study coordinator as a first step. This may happen over the phone or in person.  This conversation will cover things like:

  • What is the study about?  Is it a good fit for you? Or would another study be better?
  • What are the eligibility requirements? Age, diagnosis, disease stage?
  • What are the risks and benefits of being in the study?  Generally, observational studies are very low-risk because they do not involve experimental treatments.  Observational studies do not directly benefit the people who participate in them with a potential treatment, but many people find satisfaction in participating and contributing to science.


If you decide to participate, the first thing that will happen is a “consent interview”.  Although you may have had a detailed discussion with the study coordinator and even reviewed a consent form, it is  important to have this conversation in person to be sure you understand the goals of the study, its duration, activities involved and potential risks. We will make sure that you are eligible for the study and that all of your questions have been answered before signing this form.

  • The study coordinator will go over all the information about the study with you, including the risks of the study procedures.
  • You will be asked to sign an informed consent form, which explains the study and makes sure all your questions are answered before you enroll in the study.
  • In some cases, a participant may no longer be able to provide informed consent because of problems with thinking and confusion (due to neurodegenerative disease).  In these situations, some studies will allow the legally authorized representative to sign the consent form.


After the consent interview, if you have agreed to take part in the study, you will have study-specific assessments.  These generally include a neurological exam, questionnaires about your activities, tests of your thinking, and interviews with study staff.  Sometimes, the studies may involve undergoing additional procedures such as brain scans or donating a blood sample or undergoing a spinal tap. In many instances these additional procedures are optional.


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