For Patients/Parents

The Nebraska Pediatric Clinical Trials Unit (NPCTU) was established 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 (NPRR) was created to help achieve this goal. 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. 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.

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.

For more information, please email the NPCTU at or call us at (402) 253-9176.

 

This registry is supported by the National Institutes of Health Office of the Director, Grant Number UG1OD024953.

IRB# 673-17-EP