What would it look like if I participate in medical research?

Firstly, thank you for choosing to help advance medicine and those with similar conditions as yourself!

A staff member will ask you some questions about your diagnosis and medication history to see if you would match the required criteria for any of our research.  If it appears that you do, you will be personally invited to learn more about the study. You will be provided with every small detail about the study, as well as ample time to review the information and ask as many questions as you would like. If you decide that you would like to participate, you must provide your signature for a consent form. Participation in any research is always voluntary and confidential.  You are under no obligation to join any study, and if you do join, you are free to stop for any reason, at any time.

What will I be doing? Are there any risks?

It depends on the type of study.  Some studies, especially observational studies and biorepositories, involve little to no risk. For studies regarding medications already on the market, the risks are already known, and are the same as what exists for non-research usage.  Studies involving new medications may have unknown risks. We will thoroughly explain all known, unknown, and possible risks as well as the likelihood that you are to encounter these risks.  You will not be considered for a study if the involved treatment or procedures pose a serious risk to you.

What’s the difference between observational, interventional, and biorepository studies?

     Observational Studies/Registries

These studies usually enroll patients with a particular medical condition who have either been recently diagnosed or are about to start taking a particular medication.  They do not alter anything about your treatment. Rather, the purpose is to seek information on how your treatment is going.  For example, you would be asked to rate your symptoms every few months and to report any side effects you have from the medications you are taking.  All information would be reported without your identifying information to protect your privacy.