You Are Invited To Participate in a Global Study
(See Links Below)
The Hendren Project invites you to participate in a global research opportunity. Drs. Andrea Bischoff and Luis De La Torre wish to learn more about your experiences in treating anorectal malformations (ARM) and Hirschsprung disease (HD). The goal of this project is to gain a better understanding of global treatment practices for ARM and HD so we can improve our educational outreach efforts.
We are inviting all registered users of The Hendren Project who work at a facility that has performed at least ten primary operations for any anorectal malformation or at least five primary operations for Hirschsprung disease to participate.
If you join the study, you will complete a survey collecting some basic clinical information for each of the last ten primary operations for ARM done at your current facility. A second survey will collect some basic clinical information for each of the last five primary operations for HD done at your current facility. You may complete both surveys if you qualify and wish to, or, just one or the other survey if your facility has not met the minimum number of primary operations for both, or that is your preference.
We ask participants to provide their full name and credentials as part of the survey. This is so every participant can be listed as an author on the manuscript. No more than two authors will be allowed per institution, and all participant authors will be listed in alphabetical order.
You will be required to retrospectively review the operative reports in order to complete the surveys, so please ensure that you obtain any necessary approvals from your appropriate ethical review boards as required to follow your local rules and regulations prior to viewing any protected data.
This type of research has very few risks associated with it. One possible risk is that others outside of the research team may see your information. We have many ways that we protect your information and every effort will be made to keep information secure by keeping all data in a secure, password protected database. We also are not collecting any identifiable health information. There may be additional unknown risks.
You have a choice about being in this study, you do not have to participate if you do not want to.
This study is not designed to benefit you directly.
The data we collect will be used for this study, but may also be important for future research. Your data may be used for future research or distributed to other researchers for future study without additional consent if information that identifies you is removed from the data.
If you have questions, you can call or email Andrea Bischoff, MD at +1(720)777-9448 or ANDREA.BISCHOFF@CUANSCHUTZ.EDU. You can ask questions at any time.
You may have questions about your rights as someone in this study. If you have questions, you can call COMIRB (the responsible Institutional Review Board) at +1(303)724-1055 or COMIRB@ucdenver.edu.
By completing these surveys, you are agreeing to participate in this research study.
If your current center has completed at least ten primary operations to repair any anorectal malformation, you have obtained any necessary regulatory approvals, and you wish to participate in this study please complete this survey:
ACCESS ANORECTAL MALFORMATION SURVEY HERE
If your current center has completed at least five primary operations to repair Hirschsprung disease, you have obtained any necessary regulatory approvals, and you wish to participate in this study please complete this survey: