Health Research


Volunteering

Q. Why should I participate in a clinical trial or study?
An asian couple with laptop in front of them
Think for a moment about everything you do to stay healthy. It may be leading a certain lifestyle to lower your risk of developing heart disease or taking medication to help a medical condition. What might not come to mind is how you and your family might benefit from clinical research - your son's vaccinations, your mom's migraine medication, your partner's physical therapy, or your brother's blood transfusion - none of these would be available if health research didn't prove that they were safe and effective.
Becoming involved in health research is also a way to participate in the very latest approaches in treatment and prevention for a particular challenge you may be facing, such as cancer, diabetes, heart disease, depression, or obesity. While there are no guarantees, participating in a study may be the only way to gain possible access to these new treatments until they are approved for public use.
An interracial family
And, if you're a member of an underrepresented group, such as African Americans or Latinos, your participation becomes especially important. For a variety of reasons, some medicines and treatments work differently depending on an individual's race or ethnicity. In other cases, the symptoms of a condition may differ, which affects a doctor's ability to make a correct diagnosis. We want people from all groups represented in health research. That way, everyone can potentially benefit.
Even when health research doesn't immediately identify a better approach, it inspires new ideas for further study. So unless we try - and try with your help - health care improvements simply don't occur. Each and every study brings all of us closer to a healthier way of living.

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Q. How do I get involved in clinical research?
You've already taken the first step by learning more about health research happening right here at the University of Rochester Medical Center (URMC). When you're ready, take a look at our Open Studies page and see if there's a study that interests you. Once you find a study, you'll be able to contact the study coordinator or lead researcher directly, or you can call our Contact Center at (585) 758-7877.
Talking to your doctor is another way to get involved. Your doctor knows you and your health history and can provide good advice on whether participating in health research is for you. Your doctor may also be able to help you determine what studies are available for a specific disease or condition.

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Q. What questions should I ask my doctor about a research study?
A doctor listening to a patient
If your doctor suggests that you consider a clinical trial or research study - or you decide to get involved yourself - it's important to have good information when you're deciding whether to participate.
Start with the questions that immediately come to your mind. Then, look at this list for ideas of others you might want to ask.
  • What is the purpose of this study?
  • How long will the study last?
  • What kinds of tests, therapies, or treatments will I receive?
  • Why do researchers think this approach will work?
  • What other similar studies have already been done?
  • What are the short-term benefits?
  • Who has reviewed and approved the study?
  • What are my responsibilities during the study?
  • Who will be in charge of my care during the study?
  • Will I still be able to see my own doctor?
  • Will I be paid for my participation in this study?
  • What risks should I be aware of?
  • How will the researchers be monitoring my safety?
  • What if I get sick from the study? Will the cost of my care be covered?
  • How will my medical records be protected?
  • How do these benefits and risks compare with the standard care that people already receive?
  • Can I speak with other people who are participating in the study?
  • Will I be made aware of the study results?
Your doctor will have some of the answers, but for study-specific questions, you may want to call the study coordinator (the study coordinator's contact information is provided with each study). Of course, not every one of these questions will apply to you. But getting the answers you need should help you feel more confident about participating in health research.

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Q. Is my privacy protected?
Your privacy, and the privacy of your medical records matters to you, and it matters to us, too. You can read and download more about URMC privacy topics as they relate to your internet use and medical information.
Your confidentiality will also be protected. When you participate in or request more information about a particular study your name and other information that identifies you will not be sent outside of URMC unless we have your written permission. In some cases, the law may allow us to send your personal information. If you have any questions or concerns about your privacy please call us at (585) 275-1020 or ask the study coordinator for more information.

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Q. Why is it important that people from all races and ethnicities participate in health research?
Vulnerability to sickness and medical conditions is something we all have in common. Because the purpose of health research is to benefit everyone, different medicines and treatments need to be studied on all types of people representing diversity in gender, race, ethnicity, age, and even health.
African Americans and Latinos represent the two largest minority populations in the U.S. yet both are critically underrepresented in clinical research, That concerns us. Some medicines and treatments work differently depending on an individual's race or ethnicity. In some cases, such as skin cancer in African Americans, the symptoms of the cancer appear on the skin differently, which directly affect a doctor's ability to make a correct and timely diagnosis. Health research could be one way for doctors to improve their ability to identify the early stages of skin cancer on darker skin tones - knowledge that could ultimately save lives.
Female Asian and African American
Bottom line: without the involvement of African Americans, Latinos, Asians, and other ethnic and racial groups, our researchers can't gather the information they need to determine the best ways to keep individuals of these groups healthy. The University of Rochester Medical Center is working hard to eliminate these health inequalities in underrepresented populations. We're partnering with community leaders and organizations and getting the word out on the importance of health research to make sure everyone understands how vital it is that all groups - not just some - participate in research.
If you are a Latino or African American, your participation means good things for the health of your community. Make a big difference today. You can start by looking over the open studies to see what might interest you.

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Q. Do I need to be sick to participate?
No—health research needs the help of healthy volunteers too! In some studies researchers need to compare healthy volunteers with people who have a specific disease or condition. Quite often, in the earliest phase of health research, new drugs and treatments are tested on healthy volunteers first. Either way, your efforts will help treat and prevent disease for those at risk or who are already suffering.
Take a look at the list of open studies that need healthy volunteers.

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Q. What exactly is a healthy volunteer?
There are actually two types of healthy volunteers. The first type is a person who has no known medical conditions. The second is someone who may have a medical condition, but one that is unrelated to the clinical trial or study in question. For example, let's say you have asthma, but are interested in being part of a study on diabetes. If you don't have diabetes you may be considered a healthy volunteer for that particular study.
Take a look at the list of studies currently looking for healthy volunteers to see if anything interests you.

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Q. How much of my time will it take?
Every clinical research study has different time requirements. Some might involve very little of your time, while others will require visits once a week or more. Occasionally, a long-term study will want to check in with you over the course of several years.
The description on our Open Studies page will have information about time requirements. If you need more details, feel free to contact the study coordinator or lead researcher listed.

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Q. Will I be paid for being involved in clinical research? Will there be any costs to me?
In some cases, participants in trials and studies receive a small fee for their involvement to cover the cost of transportation and any other out-of-pocket expenses. Some or all of the care you receive through health research — such as doctor visits, medications, tests, and procedures — most often are provided at no cost to you. However, this varies from study to study. Be sure to ask your research coordinator for full details.

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Q. Can I withdraw from a study once I get started?
Yes. You may withdraw from a clinical trial or study at any time, for any reason. While your participation is very valuable to us, it is even more important that you make the decisions that are right for you. All our researchers will support your decision if you decide you can't continue participating in a study.
It's also important to understand that we can choose to end your participation, as well, if we decide that the study is not in your best interest, if you don't follow the rules of the study, or if the study is discontinued. If we ever have to end your participation, we'll make sure you understand the reasons why.

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Q. What if I can't find a trial or study that interests me?
If you wish to participate in health research but do not see a clinical trial or study listed in your area of interest you have a couple of options.
The URMC Volunteer Registry is an easy, convenient way to find out about new studies that would be a good match for you. Anyone can join this free service and it only takes a few minutes! If you change your mind, you can easily remove your name at any time.
All you have to do to sign up is provide your name and contact information so URMC can let you know about future studies. When you register you can be specific about the types of studies that appeal to you most, such as high blood pressure, cancer, menopause or even being a healthy volunteer. This will allow us to send you a more customized list of studies. You can join the registry by following this link to the URMC Volunteer Registry.
You can also contact our Call Center at (585) 758-7877 or by email.

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