Welcome to the Nebraska Pediatric Research Registry!

Returning?

A A A

The Institutional Development Awards Program (IDeA) States Pediatric Network was established by the National Institutes of Health (NIH) in 2016 as part of the Environmental influences on Child Health Outcomes (ECHO) program. The mission of the IDeA States Pediatric Network is:

To provide medically underserved and rural populations with access to state-of-the-art clinical trials
To build pediatric research capacity at a national level

Learn more about the ECHO Program and the IDeA States Pediatric Network.

As part of this network, the University of Nebraska Medical Center (UNMC) has established the Nebraska Pediatric Clinical Trials Unit (NPCTU) to provide the underserved and rural populations of Nebraska and surrounding states access to clinical trials. Our clinical outreach network has access to a wide variety of underserved populations who would benefit from inclusion in clinical research and would enhance the quality and applicability of data generated for pediatric research as a whole.

The Nebraska Pediatric Research Registry was created in order to allow parents and children to be notified when local research opportunities in child health become available. We appreciate your interest and look forward to hearing from you!

This registry is supported by the Eunice Kennedy Shriver National Institute of Child Health & Human Development of the National Institutes of Health. UNMC receives money from the NIH to conduct this registry as part of its ECHO program.

IRB# 673-17-EP

Page 1 of 3

The purpose of the Nebraska Pediatric Research Registry is to collect and maintain information from families who may want to participate in research in the future.

Research is critical to discovering new ways to improve child health, including new prevention and treatment plans. This is different from the care received during well-child visits. However, some studies take advantage of routine care in order to gather information.

Volunteering to be a part of the Nebraska Pediatric Research Registry is simply a way to indicate your interest in being contacted when a clinical study that may be relevant to you and your family is initiated in Nebraska. Participating in the registry does not automatically enroll your child in a study.

If you choose to be a part of the Nebraska Pediatric Research Registry, a member of the NPCTU team will contact you if a trial becomes available that may interest you based on your demographics, child health interests, or location. New research studies are always in development, so this may be very soon, or it might take several years. We may even create new studies as a result of your feedback and interests!

As these studies become available, a member of the NPCTU team will provide you with a brief summary of the trial, as well as contact information for the investigator and study team. If the study is of interest to you and your family, you may reach out to the study team directly to learn more about the specific screening and consent procedures required to participate, as well as more details about the benefits and risks associated with the study.

Please use the following links for more information regarding clinical research and the rights of research subjects in order to help you decide whether or not to allow your child(ren) to take part in the registry. You are encouraged to print these documents and keep them for future reference. If you would prefer to have these documents in Spanish, or would like assistance from an interpreter, please contact the NPCTU at npctu@unmc.edu. You will have the opportunity to download a PDF file of your responses at the end of the survey.

- What Do I Need to Know Before Being in a Research Study?
- The Rights of Research Subjects

Attachment:IRB - What Do I Need to Know Before Being in a Research Study.pdf

Attachment:IRB - Rights of Research Subjects.pdf

We are going to ask a series of questions about your interest.

Would you like to continue?

* must provide value

Yes

reset

Completion of the Nebraska Pediatric Research Registry is voluntary. You may choose not to complete the form. The information you provide will be securely stored until your child reaches 19 years of age. However, if you or your child(ren) decide that you are no longer interested in being contacted for future studies, you may withdraw at any time by contacting the Nebraska Pediatric Clinical Trials Unit (NPCTU).

Call the NPCTU at (402) 253-9176
Email the NPCTU at npctu@unmc.edu

If you choose to withdraw your participation, the information you have shared will be removed from the Nebraska Pediatric Research Registry, and you will no longer be contacted by the NPCTU regarding future studies. Withdrawing or removing your information will have no effect on the care that you or your child(ren) receive.

Would you like to continue?

* must provide value

Yes

reset

You and your child(ren) have rights regarding the privacy of your information collected for this registry. This medical information is called "protected health information" (PHI). The basic PHI collected for this registry includes your names, basic demographics, and your contact information. You are authorizing us to use your child's PHI for as long as the registry is being conducted.

Securing your private information is very important to the NPCTU team and all necessary steps will be taken to protect the privacy and confidentiality of you and your child(ren)'s data. Only authorized NPCTU staff will be able to access your information, and information you provide for the registry will be kept on a highly secure server at UNMC.

The information in this registry may be reviewed by auditors to ensure that it meets federal and state patient safety and privacy regulations. These reviewers may include members of the Institutional Review Board of UNMC institutions or regulators from the U.S. Office of Human Research Protections (OHRP).

Would you like to continue?

* must provide value

Yes

reset

Completing the Nebraska Pediatric Research Registry will help ensure that you know about relevant research opportunities as they arise. Your child is not expected to get direct benefit from participation in the registry; however, completing the registry application may allow you to hear about research studies that you may not have otherwise learned of. There is no cost to you to have your child(ren) in the registry, and neither you nor your child will be paid to be in this registry.

Consent:
If you complete the Nebraska Pediatric Research Registry you will be asked to provide:
- You and your child(ren)'s names and contact information
- Basic personal information such as age and ethnicity

The Nebraska Pediatric Research Registry is voluntary; you may choose to stop the registration process at any time and your information will not be saved. After registration, you may contact the NPCTU at any time in order to withdraw your participation.

Completing the registration takes about 5 minutes. If you require additional time to complete the registry survey, there is an option to "Save & Finish Later" without submitting your response.

Thank you for your interest! Please click "Next Page" below:

Thank you. We understand that you do not wish to be a part of the Nebraska Pediatric Research Registry at this time.

If you have any questions, please feel free to contact the Nebraska Pediatric Clinical Trials Unit team at npctu@unmc.edu, or visit our website at www.unmc.edu/nebraskapedsctu.

Thanks for visiting!

You have selected an option that triggers this survey to end right now.

To save your responses and end the survey, click the 'End Survey' button below. If you have selected the wrong option by accident and/or wish to return to the survey, click the 'Return and Edit Response' button.