Through research and your generous participation we can improve medical knowledge and develop new treatments. Thank you for considering to participate in research. Below is a list of frequently asked questions. In addition, you will find some videos developed by the Office for Human Research and Protections (HHS.gov) that provide some basic information about research. For other questions, please contact our clinical trial research coordinator: Julie Segura Julie.Segura@neurology.ufl.edu
What is research?
This video provides basic information about scientific research, the goals of research, and discusses how clinical research differs from medical care. (3:00)
What are clinical trials?
This video discusses types of human research with a focus on clinical trials, and explains common terms that potential participants should know. (4:20)
What can you tell me about research at UF?
The Department of Neurology at the University of Florida seeks to provide the most cutting edge therapies. We are proud to provide multidisciplinary patient centered care for all patients. Our goal is to provide the most promising and innovative clinical trials that look at new treatments, investigations and the mechanisms of neurological disease. Our department has an incredible team of doctors, investigators, and clinical trial coordinators to help navigate the many complexities of clinical trials. The goal is to provide personalized care, including participation in those trials. Patients from across the state and country come to participate in this cutting edge trials. We are very conscientious of our position in research and ask any patients or caregivers interested in participating in any of our trials to contact us.
What are the important questions to ask prior to participating in a research study?
This video emphasizes that participating in research is voluntary and encourages potential participants to ask questions and get the information they need to decide whether to participate. (4:44)
What is randomization?
This video explains the concept of randomization in research studies and what potential participants need to know when volunteering for a study with a randomized design. (7:25)
Do I have to pay for what is going on in the trial?
Most trials are sponsored by the NIH, philanthropic organizations and the pharmaceutical companies. This allows us to provide most of the innovations and trials free of cost for more patients. They sometimes provide a small stipend for transportation and stay.
How long do trials last?
The amount of time depends on the specific trial. Sometimes trials are very quick and require just one visit if we are able to get all the information needed in that visit. Others require multiple visits. The majority of national and international trials looking at specific drugs tend to last from 3 months to a year. Patients do not need to be here the whole year and the majority have monthly visits. Common protocol is to have three to five visits, once a month.
What do I gain from participating in a research trial?
You may or may not receive direct benefit from participating in a study, but you will be helping to further research efforts regarding your particular disease. In addition, these studies are investigating cutting-edge therapies and procedure, in the hope that they will improve patient outcome and disease progression.
Why are clinical trials important?
Clinical trials are designed with different goals. These goals are based on a hypothesis developed by a team of researchers. These hypotheses need to be tested in the “real world”, and the scientific way to test these hypotheses is by doing clinical trials. Clinical trials create a controlled and supervised environment to conduct experiments testing new ideas or hypotheses. Some clinical trials aim to improve our understanding of the mechanism of the disease – what causes the disease, how does it progress, what are the risk factors, what can be done to slow the disease process or cure it. Other clinical trial are investigating a new treatment or procedure (such as a new medication or a new form of brain surgery) to determine its effects on the disease and the patient’s state.
In the end, clinical trials are the means by which researchers test their ideas, to make sure that the treatments and procedures that your doctor is recommending help your symptoms and/or cure your disease.
What is the clinical trial process? (consent, screening, research visits)
When you report interest in a research study, a member of our research staff will talk with you about the study and review a document called an informed consent with you. Research staff will ensure you meet the criteria to be in the study. If you meet the criteria and agree to participate, you will be scheduled for the required research visits. Various trials require different lengths of participation time which could last from days to years.
Do I have to pay to be part of clinical trials?
You do not have to pay anything to be part of a trial. A clinical trial allocates funds to cover the expenses related to the trial execution, sometimes in collaboration with your insurance. In all cases, you are not expected to pay to be part of the studies.
What research is available at the University Of Florida Department Of Neurology?
There is a variety of different research offered at the University of Florida. We have multiple trials that look at the most promising cutting edge drugs or interventions for treatment of neurological disorders. We also have a lot of trials that are started by investigators at UF who want to understand the mechanisms of different neurological disorders.
If I wanted to participate in the trial, how would I do that?
There are a couple of things to do if you want to participate in a trial. We first have to see the patient at UF to see if they are eligible for any of the trials that are offered. Clinical trials are strict about who can and can’t participate to control the population to yield the best results. If anyone is interested in participating, there are various ways to reach us. There is a phone number and email to reach the clinical coordinators on our website.
Is there a list of clinical trials that I can look up?
There are so many new trials that change so often that a lot of information can get outdated quickly. The most updated information can be found through email or phone call. We are always available to talk to our patients about research! You can also look here for a list of our current ongoing trials in Neurology by disease.
What is the easiest way to get a hold of UF researchers?
To get a hold of UF call the listed phone number or you can find the clinical trial coordinators’ and experts’ email on our website. We check that email very frequently and use it to communicate with our patients.