Study Title: Provider Attitudes and Perceptions regarding Nonadherence & Transplant Graft Dysfunction in Pediatric Transplant Recipients
Study Doctor/Researcher: Mihaela Damian, Stanford University
Sponsored by: International Pediatric Transplant Association (IPTA)
You are being asked to take part in this survey because you are a provider of children who have undergone a transplant. This study is being conducted by Stanford University and is sponsored by the IPTA Ethics Committee.
The IPTA Ethics Committee would like to assess how the transplant community views nonadherence, especially when considering re-transplantation for end stage graft dysfunction. We are conducting this survey to better understand how pediatric transplant clinicians approach this problem across the world. With this information, we hope to develop strategies to better care for this challenging population. If you choose to be in the study, you will complete a survey of questions. Please answer the following questions as they pertain to medication and clinic appointment adherence, and how it relates to re-transplantation at your center. The survey will take about 15-20 minutes to complete.
Being in this study is optional and voluntary. You do not have to take this survey if you do not want to. The answers that you provide in the survey may still be used if you stop the survey and do not finish. Any question you do not answer will not be collected.
You can skip questions that you do not want to answer or stop the survey at any time. The survey is anonymous, and no one will be able to link your answers back to you. Please do not include your name or other information that could be used to identify you in the survey responses. You must be at least 18 years old to participate in this research survey.
There are no direct benefits to you for taking this survey.
This survey will be done online using the service REDCap, a HIPAA compliant platform for survey and data collection. The information that you provide in the survey will not be linked to your computer, email address, or other electronic identifiers. Information provided in this survey can only be kept as secure as any other online communication.
Contact Information:
Questions: If you have any questions, concerns or complaints about this research, its procedures, risks and benefits, contact the Protocol Director, Mihaela Damian, at mdamian@stanford.edu. You should also contact them at any time if you feel you have been hurt by being a part of this study.
Independent Contact: If you are not satisfied with how this study is being conducted, or if you have any concerns, complaints, or general questions about the research or your rights as a participant, please contact the Stanford Institutional Review Board (IRB) to speak to someone independent of the research team at 650-723-5244 or toll free at 1-866-680-2906. You can also write to the Stanford IRB, Stanford University, 1705 El Camino Real, Palo Alto, CA 94306.
By clicking the designated button, you indicated your voluntary agreement to take part in this research study by completing this online survey.
Thank you for considering,
Mihaela Damian
Stanford University