FAQ about Participating in Research
1. Why Research Studies are Free of Financial Charge
Participants in our research studies are evaluated and treated free of financial charge. This is possible because the research studies are funded by private and governmental agencies. While patients who participate in these studies are not charged a monetary fee, they do provide valuable information in return for the evaluation and/or treatment. In a very real sense, patients who participate in our research studies are important members of our research team. For example, patients are often asked to fill out questionnaires, partake in interviews, or allow blood to be drawn. The collection of this information requires a close collaboration between the patient and the study team.
2. How safe is the research?
Our studies are designed to gather information in the safest way possible. All research involves some risk, but every effort is made to minimize risk. All research studies at our institution are reviewed for subject protection and safety by the Institutional Review Board. Participants in a research study are given a consent form which describes the study, the risks and benefits, and the potential alternatives to participation in the study.
3. Why do people participate in research?
Generally, patients participate in a research study for one or more reasons: a) to enhance their clinical evaluation and care by coming to a major academic center with known expertise; b) to enhance scientific understanding of an illness so that treatments can be devised to help others around the world who may also be afflicted with this illness; and/or c) to take advantage of an opportunity for evaluation and/or treatment that is free of financial cost. Normal controls typically participate in research studies because they wish either to partake in a scientific research study or to earn extra income (as a result of the honorariums provided to normal control volunteers).
How to Contact Us
In the "Research Studies" section of our Web Page, you will see a listing of current studies. Each study has its own study coordinator with a designated way to reach us. This may consist of a downloadable screening form (which can be faxed to us), an email address, and/or a telephone number. You can also call us directly for screening for any of our research studies at 646-774-7503.
If you are outside of commuting distance to New York City, it probably does not make sense for you to consider participating in one of our studies (unless it is a one-time evaluation study). Please understand that although we know a lot about Lyme Disease, we cannot make clinical recommendations over the phone about patients we have not evaluated in person. We advise that non study-related questions be addressed to your local health care provider.
If you are interested in a clinical evaluation by us and you suffer from neurocognitive or neuropsychiatric symptoms that may be due to Lyme or another tick borne disease, then please consider coming for a 1 1/2 day outpatient comprehensive neuropsychiatric evaluation. For more information about this, contact 646-774-7503. Please leave your phone number and email address so that a member of our team can contact you. We will then help you to determine whether you may be eligible for a research study or whether a clinical evaluation through our private Evaluation service makes the most sense. Dr. Kathy Corbera is associate director of the Evaluation Service and she can be reached at 646-774-8099 should you have additional questions.
If you are interested in learning more about Lyme Disease, please make use of the excellent and comprehensive information available from the links at the end of this side bar. There are vast resources on the www to educate an individual about Lyme Disease.
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