The story of the Transplant Pregnancy Registry International (TPRI) begins with a compassionate doctor and his quest to help transplant recipients who wanted to start a family.
When speaking with a patient in 1991, Dr. Vincent Armenti realized there was almost no information available about the possibilities for pregnancy after an organ transplant. He then established the National Transplantation Registry (NTPR) at Thomas Jefferson University in Philadelphia, Pa. NTPR later became the Transplant Pregnancy Registry International (TPRI).
The focus of the Registry was initially to study recipients in North America, to discover what happened if a recipient of a solid organ transplant became pregnant. The key questions were – How might pregnancy affect the mother, her transplanted organ, and her baby?
More than 2,800 transplant recipients have shared their information with the TPRI reporting more than 4,800 pregnancy outcomes since 1991. Our database has pregnancy information that we have collected over the decades. This helps us to provide vital data to those considering parenthood after a transplant. The TPRI studies pregnancies both in female transplant recipients and in those fathered by male transplant recipients.
The TPRI is a unique voluntary pregnancy registry. It not only seeks to include new post-transplant pregnancies, but also continues an ongoing follow up with our recipients over the long term. Our goal is to call recipients every 2 two years for this follow–up, to see how the recipient, their child(ren) and their transplant are doing. In addition to gathering data, every year the TPRI fields hundreds of questions from transplant recipients and healthcare providers worldwide who are seeking answers to post-transplant pregnancy questions. Each request is personally answered by our team.
Our study coordinators speak with hundreds of current and future mothers and fathers who are transplant recipients. We also provide data to healthcare providers worldwide. With help from their own healthcare team and with information provided by the TPRI, recipients can make the best decision about parenthood.
In 2013, the NTPR moved to join the Gift of Life Institute and is now located within the Gift of Life Donor Program in Philadelphia, Pa. Gift of Life Donor Program is an organ procurement organization that, in 2020, coordinated the most organ donations in the United States. It has a 13-year track record of coordinating the most donors per million population (to learn more about GLDP visit www.Donors1.org).
The Gift of Life Institute’s mission includes education and research, where we are a good fit. With support from the Gift of Life Institute, the NTPR was renamed the Transplant Pregnancy Registry International (TPRI) in 2016 to reflect the need for our Registry to expand to include eligible recipients from around the world. Since then, the TPRI has gained recognition and experienced an increase in registrants. The TPRI has now reached recipients in more than 20 countries (see map above for details).
Educating healthcare professionals about pregnancy after transplantation is also part of the mission of the TPRI. The TPRI staff and collaborators have participated in more than 500 professional presentations in the United States and around the world. Additionally, we are pleased to say that they have written more than 200 professional publications based on our study data. Each year, the TPRI also publishes an annual report that provides an overview of our pregnancy data, as well as the latest information from the studies we have conducted over the previous year. This report and our professional publications are available by request by emailing the TPRI team.
The TRPI currently stands as the longest-running voluntary pregnancy registry of its type in the world. Some of our early participants have now even become grandparents!