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Frequently Asked Questions2020-09-10T11:51:25-04:00

Frequently Asked Questions

Frequently asked questions about health research and clinical studies

Search the topics below to find answers to frequently asked questions about health research and clinical studies.

Do you have a question about research participation that is not listed here?  Submit your question to inhealth@iu.edu

What is informed consent?2020-06-12T14:52:16-04:00

What is Informed Consent?

Informed consent is a voluntary agreement to participate in research. When you sign an informed consent form, you are stating that you have an understanding of the study you are participating in and the risks involved. This form lists the study procedures, so you know what to expect. You will be asked to read this form before participating in any study. You should receive a copy of this consent form for your records.

What is health research?2020-06-12T14:45:37-04:00

What is health research?

Health research is broadly defined as the study of human health and typically occurs in healthy people through questionnaires, surveys or interviews.

What is All IN for Health?2020-06-12T14:40:25-04:00

What is All IN for Health?

All IN for Health is a program made possible by the Indiana Clinical and Translational Sciences Institute, a collaboration among Indiana University, Purdue University and the University of Notre Dame. We are dedicated to improving the health of Indiana residents by providing health resources via e-newsletters, blogs, science-backed articles, social media contests and more. We also promote improved health by providing access to health research and clinical study opportunities happening every day in Indiana.

What is a clinical study or clinical trial?2020-06-12T14:45:57-04:00

How can I get a list of potentially eligible participants out of the registry?

Used interchangeably, clinical studies typically involve the study of a potential new medicine in patients with a particular disease.

How is my personal information protected?2020-06-12T14:52:39-04:00

How is my personal information protected?

There are guidelines put in place to protect your personal health information. Personal health information is stored on protected computers. Usually, researchers will remove your name and other direct identifiers (like your date of birth) from your information and replace them with a code. There will be a master list linking the codes to names, but it will be kept separate and secure. Researchers also limit and keep track of who sees your personal health information. To work with your health information, researchers must promise not to try to find out who you are. Researchers will tell you if someone accesses your data who does not have permission to do so.

What is the goal of the All IN for Health program?2020-06-12T14:43:15-04:00

What is the goal of the All IN for Health program?

All IN for Health’s goal is to make Indiana a healthier state. We are doing so by providing health resources for Indiana residents to utilize and participate in, as well as access to health research and clinical study opportunities.

Why is health research important?2020-06-12T14:46:36-04:00

Why is health research important?

Health research is important because the study of human health is constantly evolving. Health research helps us to understand and answer important medical questions such as attitudes and beliefs about mental health issues, isolation and drug abuse, among many other topics.

What will be expected of me if I join All IN for Health?2020-06-12T14:43:49-04:00

What will be expected of me if I join All IN for Health?

By joining All IN for Health, you can either subscribe to our e-newsletters for receiving health resources or you can engage even further by completing a volunteer profile; to find out what research and clinical study opportunities exist for you to potentially participate in.

How do I sign up to participate?2020-06-12T14:53:11-04:00

How do I sign up to participate?

You can sign up to participate in health research and clinical studies at allIN4health.info/volunteer. Here, you will be guided through creating your volunteer profile to be matched to studies for which you are eligible.

Why should I create an All IN for Health volunteer profile?2020-06-12T14:44:14-04:00

Why should I create an All IN for Health volunteer profile?

By creating an All IN for Health volunteer profile you will gain access to the thousands of health research and clinical studies that are being conducted in Indiana each day. If you decide to participate you will receive medical attention, contribute to a greater pool of evidence about a particular disease or condition and possibly be compensated for your time and participation.

Who can participate in health research or clinical studies?2020-06-12T14:47:09-04:00

Who can participate in health research or clinical studies?

Anyone can participate in health research or clinical studies, including people that are healthy or sick, children, and dependent individuals. Each study has requirements that must be met before a volunteer can take part. These requirements are called “inclusion criteria,” and the requirements that prevent volunteers from participating are called “exclusion criteria.” These criteria may pertain to age, gender, the type and progression of a health condition, previous treatment history, and other medical diagnoses.

Who can I contact if I have more questions about All IN for Health, health research, or clinical studies?2020-06-12T14:53:29-04:00

Who can I contact if I have more questions about All IN for Health, health research, or clinical studies?

You can connect with us at inhealth.iu.edu.

What are the benefits of participating in health research studies or clinical studies?2020-06-12T14:47:44-04:00

What are the benefits of participating in health research studies or clinical studies?

There are many reasons why people volunteer. The following are some reasons people participate:

  • to help others
  • to help advance science or knowledge about a particular health condition
  • to possibly improve their own health
  • to benefit from having a medical team involved in their care
  • to receive more treatment options or work with a specific physician that might not otherwise have been available to them outside of the research study
Could I be paid to participate in health research or clinical studies?2020-06-12T14:48:20-04:00

Could I be paid to participate in health research or clinical studies?

Some studies will pay you for your participation while others will not. Before you agree to participate, you will be told whether or not you will be paid, how much you will be paid, how you will be paid (i.e. check, gift card), and when you will be paid (i.e at each visit/session, at completion). Payment is not meant to convince you to participate but to thank you for giving up your time and to cover any costs you may have incurred by participating (i.e. travel, taking time off work).

Does it cost anything to participate in health research or clinical studies?2020-06-04T12:02:29-04:00

Does it cost anything to participate in health research or clinical studies?

Most health research or clinical studies are funded by the government, pharmaceutical or device companies, or philanthropists, so there is no cost to participate. All research related visits, medications, and tests are often provided free of charge. In addition, there may be reimbursement for your travel, parking, and time. In some studies, researchers may be looking at how well the treatment compares to usual care or the care that is typically provided by your doctor. In these cases, researchers talk with you at your regular doctor office visits, and your standard office co-pay may apply. Researchers will inform you before you participate what payment you will receive and what costs, if any, there are for participating.

 

What questions should I ask before participating in health research or clinical studies?2020-06-04T12:04:23-04:00

What questions should I ask before participating in health research or clinical studies?

It is essential to be well-informed before you agree to participate in health research or a clinical study. Every study is going to have different benefits and risks associated with it. The following is a brief list of some possible questions you may want to ask before agreeing to participate.

  • What kind of study is this?
  • Why are you conducting this study?
  • Where does the study take place (ex. by phone, via mobile app, at a medical clinic)?
  • What will I need to do (ex. fill out a survey, donate biological samples such as blood or saliva, participate in a focus group, try a new medical treatment)?
  • Does this study involve a new medication or a medical device? If so, are there any side effects?
  • Is the treatment available outside of the study?

Usually, these types of questions are already addressed in the ‘Informed Consent’ but do not be afraid to ask if you still have questions. Even if you consent to participate in a health research or clinical study, you always have the right to withdraw. By asking the right questions and talking with the research team, you can find out if the study is a good fit for you before agreeing to participate.

Are there risks and drawbacks of participating in health research or clinical studies?2020-06-12T14:50:01-04:00

Are there risks and drawbacks of participating in health research or clinical studies?

All health research studies and clinical studies may involve some degree of risk. For studies that only ask you to fill out a survey, the risks are minor, such as possibly asking you questions that could make you uncomfortable. For studies that ask you to take an experimental drug, the risks can be much greater; such as having negative side effects. The study coordinator will go over all of the risks and benefits of a study with you before you enroll. These will also be explained through the  ‘Informed Consent’ process. Each individual must weigh the risks and benefits to decide for themselves if the study is something they want to be involved in. If you have any concerns about potential risks, make sure you ask the study team.

Do all health research studies and clinical studies involve giving blood or other samples?2020-06-12T14:50:44-04:00

Do all health research studies and clinical studies involve giving blood or other samples?

No, not all health research and clinical studies involve giving blood, or other biological samples (such as urine or saliva). Any study that requests biological samples from a volunteer is required to explain this in the ‘Informed Consent’ document.

How much time will I have to commit if I decide to participate in a health research or clinical study?2020-06-12T14:51:07-04:00

How much time will I have to commit if I decide to participate in a health research or clinical study?

The time commitment depends on the type of study. Surveys may take 10-20 minutes, where focus groups may take 1-2 hours. Treatment studies could take months or years, but you may only be asked to come in for a visit once every few months. It all depends on what the study is looking at. The time commitment will be outlined in the ‘Informed Consent,’ but you should ask the study team if this is a concern before agreeing to take part in the study.

Who oversees health research and clinical studies to make sure they are safe and fair?2020-06-12T14:51:30-04:00

Who oversees health research and clinical studies to make sure they are safe and fair?

All health research and clinical studies that involve human volunteers are reviewed by an Institutional Review Board (IRB), primarily the one at Indiana University Purdue University of Indianapolis (IUPUI) located on the IU School of Medicine campus. The IRB’s primary concern is to make sure that volunteers are safe and that the study is fair and ethical. The IRB actively monitors each research study until the study is complete. The IRB must approve any changes to the study before they can take effect, and any new information about the risks of the study are required to be reported to the IRB by the researchers.

Where can I find more information on health research and clinical studies?2020-06-12T14:51:49-04:00

Where can I find more information on health research and clinical studies?

www.allinforhealth.info

www.indianactsi.org

www.clinicaltrials.gov

www.fda.gov

www.centerwatch.com

www.ciscrp.org

“My experience in three clinical trials has been phenomenal. Although not cured, my quality of life for the nearly four years since diagnosis has been excellent. The professionalism and compassion of my [physician], the nurses, and staff have been truly exceptional.”

Research participant at Indiana University School of Medicine

“Research studies not only offer the potential for improved treatment to the individual clinical trial participant, but very importantly, provide the means for development of improved and safe therapies.”

Research participant at Indiana University School of Medicine
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