Study Number: s23-00976
Version Date: 8/11/2023
Subject: Information about a research study from NYU Langone Health: Pediatric Heart Transplant Patient Quality of Life Survey
Dear Transplant Families caregivers of pediatric heart transplant recipients,
Your experiences, insights, and wisdom are invaluable, and we believe your input can contribute significantly to the advancement of medical research and the well-being of pediatric heart transplant recipients. As parents who have cared for children undergoing heart transplantation, you possess unique perspectives, we need your input.
A research team from NYU Langone Health in New York is conducting a research study titled
Assessment of Long Term Quality-of-Life Outcomes in Pediatric Patients After Heart
Transplantation. We are sharing information about this study on behalf of the NYU Langone
Health research team. The research team may be familiar to you! Formerly part of Johns Hopkins University and now at NYU Langone Health, the team led the groundbreaking COVID-19 studies in the transplant population.
Why is the Study Being Done: The purpose of this study is to better understand the health and quality-of-life concerns that pediatric heart transplant recipients face as they transition out of the pediatric transplant network.
What will Participation Involve: Participation involves completing a brief survey online that will take about 3 minutes. The survey has questions about the daily life experiences of heart transplant recipients and their families.
Who can Participate: You may qualify to take part in this study if you are at least 18 years old, you have a child who underwent heart transplantation when they were under 18, and you are able and willing to complete the research survey.
How to Participate: Participating in this study is voluntary. Simply click on the following link to access the survey:https://openredcap.nyumc.org/apps/redcap/surveys/?s=XMELEELATXFTF4H9
Please note that all responses are completely anonymous and will be treated with the utmost confidentiality. Your privacy is our priority.
For More Information: Please contact Dr. Macey Levan from NYU Langone Health directly at Macey.Levan@nyulangone.org. Dr. Levan is the Study Principal Investigator (researcher) on this study.
We are truly grateful for your time, your openness, and your commitment to the well-being of others. Your voices matter, and together, we can make a meaningful impact. Thank you for being a part of this effort.
Our sincerest thanks from all of us,
Transplant Families