Formerly known as the National Transplantation Pregnancy Registry, the Transplant Pregnancy Registry International was established by Dr. Vincent Armenti at Thomas Jefferson University in Philadelphia in 1991. The focus of the Registry was to study the outcomes of pregnancies in any solid organ transplant recipient in North America.
Since its inception, over 2,800 transplant recipients have shared information with the Registry regarding over 4,800 pregnancy outcomes. Our database is filled with information that we have collected over the years and is provides information for those considering pregnancy post-transplant. The Registry studies both pregnancies in female transplant recipients and those fathered by male transplant recipients.
The TPRI is a unique voluntary pregnancy registry that not only seeks to include new post-transplant pregnancies, but also continues an ongoing follow-up with our recipients long-term to follow the parents, their children and their transplanted organs. Our goal is to call each recipient every 2 years, some of whom are now grandparents. In addition to gathering data, every year the TPRI fields hundreds of questions from transplant recipients and healthcare providers worldwide seeking answers to post transplant pregnancy questions, and each request is personally answered by our staff.
Each year, 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 from the Registry, we help recipients make the best decision about parenthood. The NTPR was originally supported by grants from Sandoz Pharmaceuticals (now Novartis Pharmaceuticals). Over the years the NTPR was supported by all major companies that manufacture transplant medications, including Fujisawa (now Astellas), Wyeth-Ayers Pharmaceuticals (now Pfizer), Roche Pharmaceuticals (now Genentech), and Bristol Myers-Squibb. Currently the Registry has received an educational grant form Veloxis Pharmaceuticals. As the immunosuppressant medications became generic and post-marketing surveillance less, the funding has now stopped.
In 2013, the NTPR joined Gift of Life Institute and is now housed at the Gift of Life Donor Program in Philadelphia. Gift of Life Donor Program coordinated the most organ donors in 2020 and has a 13-year track record of having the most donors per million population (to learn more about GLDP visit their website www.Donors1.org). Gift of Life Institute’s mission includes education and research, which the NTPR fit into. With support of Gift of Life Institute, in 2016, the NTPR was renamed the Transplant Pregnancy Registry International (TPRI) to reflect that participation has been expanded to include any eligible recipient in the world. Since joining, TPRI has gained more recognition and has had an increase in registrants. TPRI has reached over 20 countries (see map for details).
Part of the mission of the TPRI is to also educate about pregnancy after transplantation. The TPRI staff and collaborators have participated in over 500 presentations around the world. Additionally, they have written over 200 publications based on study data. These publications are available by email request. Each year the TPRI publishes an annual report which gives an overview of TPRI data and the different studies conducted over the previous year.
The Registry currently stands as the longest-running voluntary pregnancy registry of its type in the world. Some of our early participants are now grandparents!