Participate in a Study

Participating in observational research: Things to Consider


  • Why participate?  Participation helps doctors learn more about a disease, what is normal and not, and how diseases progress. Observational research has no drugs or interventions
  • Who can participate? There are inclusion/exclusion criteria for observational studies – they help ensure the study data is most relevant to the disease.  If you are on this page, it is probably because you are interested in studies about neurodegenerative diseases.  We have studies for patients, healthy volunteers, and at-risk family members.  Talking with the study coordinators will help you find the best fit.
  • What will happen?   See “how observational studies work” for an overview. Study visits usually include interviews, a physical exam, and cognitive testing.  Each study has its own procedures. Sometimes these include blood draws, imaging of the brain, pen-and-paper testing, online surveys, or even measurements of your eye movements. 
  • How long is a visit?   Visits can take from an hour to several days, depending on the study. 
  • Is it safe?  Because there are no interventions (such as an experimental medication), there are very few risks.  You can be bored, tired or find tests tiring or emotionally difficult.  Certain procedures may have higher risks. For example, a blood draw may have a risk of pain or infection – risks are always explained carefully during the consent process for each study.
  • What should I know before signing up?  For any type of clinical research, it is important to know:
    • Who is the study doctor and who can answer my questions about the study?
    • Why is the study being done?
    • Who can be in the study?
    • What is the time commitment? What procedures are involved?
    • Are there any risks?
    • Is there any cost or compensation?


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