Frequently Asked Questions
Frequently Asked Questions
(Click a question below to see the answer)
We have two locations:
- Norton Children's Hospital, second floor is where most of our inpatient studies are conducted.
- Novak Center for Children’s Health, 6th floor.
- Norton Children’s Hospital: parking is available in the Norton Children’s Hospital parking garage. We are able to reimburse you. The parking lot is located at the corner of Floyd St and Abraham Flexner Way on the back side of the hospital. Click this link for directions to Norton Children’s Hospital.
- Novak Center for Children’s Health: parking is available at the UofL Health parking garage located at 414 E Chestnut Street, we will reimburse you for your parking. Valet parking is available at the main entrance for a $10 fee, unfortunately, we cannot reimburse for valet parking.
A research nurse is available via a 24-hour pager. If you have a question, medical issue while on study, or emergency please call 502.629.5820 and select option 5. This will send you to our 24-hour line. Please leave a voicemail and our nurse will return your call shortly.
- Norton Children’s Hospital: walk across the 2nd floor pedway to Norton Hospital - Downtown and visit their cafeteria on the first floor.
- Novak Center, there is a Panera on the first floor of the adult outpatient center, a building that can be accessed through our pedway or across our driveway. There is also a cafeteria in the basement of the ambulatory care building. This cafeteria can also be accessed either by the pedways or by a short walk outside. Delivery is also available from multiple nearby restaurants.
- There are often food trucks parked outside Norton Children's Hospital on Chestnut Street and/or Novak Center for Children's Health on Preston Street.
- Food can be ordered and delivered to you from local restaurants
- Yes, if you would like for them to. We want to make sure your primary care doctor is aware of your participation. We can send a letter to them after you sign your consent to take part in the study. We are also happy to update any specialists you may be seeing to ensure participation in the study will not conflict with other treatments you/your child may be undergoing. You/your child’s health and well-being is our top priority.
- No, we do not have to notify your primary care doctor if you would like to keep your participation private. Your confidentiality is very important to us and our team.
- The physician that was caring for your diagnosis will still be involved. We have worked with many pediatric specialists before and are used to working with them closely. Being involved in a study may change the treatment you receive, but at the end of the study we will ensure you have appropriate follow-up appointments with your physician to continue regular care/treatments as necessary.
- Your regular care will remain the same, as it is currently, if you decide against being in a study. Your child’s medical care and safety is still our priority, and we want to ensure their health is being taken care of.
- The physicians are all pediatricians and/or pediatric specialists who have been trained to provide medical care for children. The nursing and study coordinators love working with children and their families. Many of our nurses have backgrounds working with children, some were trained at Norton Children’s Hospital before joining the research unit.
- No, your insurance should not be billed for research procedures. If you receive a bill or Explanation of Benefits (EOB) from your insurance company, please let us know. If the study you are participating in requires a procedure where insurance could be billed, your coordinator will review this with you during the consenting process.
- Most studies are performed at no costs to patients or their caregivers. Depending on the study, your research coordinator will discuss any potential charges ahead of time.
- To ensure study quality it is very important to keep track of all study medications, supplies, and forms. However, we understand that occasionally, accidents happen. If you misplace anything, please contact your study coordinator immediately so they can replace the necessary medications or supplies, and get you back on track. Study medications must be tracked to ensure your child is getting the appropriate treatment; ALL study medications and supplies generally must be returned at the next scheduled visit, even if it is an empty bottle.
- Your safety and well-being are our top priority. Each study has a list of medications that are prohibited to take while in a study, it is important to notify your coordinator if you have been prescribed a new medication. We want to make sure there are no medication interactions that could be a problem for you.
- Part of being in a research study is looking for side effects of medications. We want you to report any issues you are having so we can determine if it is related to your study treatment. Sometimes we know it may seem silly to report a headache or the common cold to your study team, but it may be more important than you think. We would rather have too much information than not enough, so we know you are getting the best care possible.
- Every study is different. Usually, your trial consent form will include a list of the number of visits you will be expected to attend. Your study coordinator will go over this information with you during the consenting process. It is important that you understand the expectations of the study and to understand your commitments to a study before it begins. Sometimes a study can can be short, needing only two or three visits that may complete within a week; while some studies last for years with study visits weekly or every couple of months. Discuss this with your study coordinator and they will be happy to explain the expectations for any studies you may be interested in. Visits can be short, lasting about 30 minutes, or last for a few hours, and sometimes they last overnight. This will be discussed with your study coordinator before you start a study.
- Every study is different and is looking for different information. Some studies may involve collecting vital signs (heart rate and blood pressure), while some studies involve drawing blood and/or possibly radiology exams such as x-rays. Your study coordinator will review this information with you before beginning a clinical trial.
- This is a myth about clinical trials and research studies. We don’t want anyone to feel like we are “testing” drugs on them or their child. Our job is to make sure that the medications we are researching are the best, most effective dose for your child. All studies must be approved by a human subject's protection office and our Institutional Review Board (IRB) to make sure the risks are minimal, and we are not putting your child (medically or ethically) in harm's way.
- You may or may not directly benefit from research studies. Your participation may provide additional information that could benefit other children in the future. Some medication studies may offer a placebo, or fake drug, while some may offer a new investigational drug that we hope is better than the current options available. Because these medications are still being studied, we cannot guarantee that your child will respond to the treatment. Your child’s health and safety are always our priority, and we want to make sure they are being given the most appropriate treatment.
- There are always risks involved with any medication and/or medical device. Until a medication or device is studied, we cannot guarantee that we know every potential risk factor. Allergic reactions are a possibility. All of our research studies are reviewed by our Institutional Review Board (IRB) to ensure that every study has minimal, if any, risk(s) involved for potential participants. It is important that you know the risks involved with your research study so you are able to make an educated decision regarding your participation.
- We hope research visits are as non-intrusive as possible in your life. If we can accommodate your schedules, we absolutely try to do this. We may not always be able to combine your research visit with your regular clinic appointment, we can try to schedule the visits back-to-back as much as possible.
- Children ages 7 and older are asked to sign a simplified version of the consent form the parents will sign, it is called an assent. Out of respect for children, we want to make sure they are okay with what we are asking them to do. For example, if a child is terrified of blood draws and the study they are participating in will need them to get a blood draw often, they may not want to do the study if they don’t see an immediate benefit to them. We are happy to talk with you and your child regarding how we can make clinical trials as comfortable as possible, and less scary.
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