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National Transplantation Pregnancy Registry Moves to Gift of Life Institute

Since 1991, the National Transplantation Pregnancy Registry (NTPR) has tracked and studied the outcomes of thousands of pregnancies in solid organ transplant recipients.

PHILADELPHIA, PA – The decision to get pregnant following a life-saving organ transplant comes with many questions. Chief among them – “Is it safe for the recipient and for the baby?”

Since 1991, the National Transplantation Pregnancy Registry (NTPR) has tracked and studied the outcomes of thousands of pregnancies in solid organ transplant recipients. In March, the NTPR moved from Thomas Jefferson University Hospital to Gift of Life Institute – the education and research arm of Transplant Foundation, a non-profit organization that supports the objectives of Gift of Life Donor Program.

To date, more than 2,000 female and male organ recipients throughout North America, reporting over 3,300 pregnancies, have voluntarily participated in the registry. The NTPR team is comprised of nurses experienced in transplant patient care and trained interviewers, some of whom are transplant recipients themselves. NTPR physicians and staff members have presented

In 2011, the NTPR celebrated its 20th anniversary and stands as the longest-running voluntary pregnancy registry in the world. In fact, some of the registry’s earliest participants are now grandparents.

“The addition of the NTPR to Gift of Life Institute aligns perfectly with the Institute’s core mission of education and research,” says Howard M. Nathan, founder of Gift of Life Institute and President and CEO of Gift of Life Donor Program. “Plans call for expanding participation in the registry by reaching out to organ recipients through new avenues and through Gift of Life’s extensive network of donation and transplantation professionals and organizations.”

“We are very pleased to have joined Gift of Life Institute. The NTPR is an ongoing study, and the information we collect has helped thousands of transplant recipients make family planning decisions,” says Vincent T. Armenti, MD, PhD, founder and principal investigator of the NTPR. “Through the registry, we have definitively shown that pregnancy after transplant is possible and can be safe under the right circumstances.”

For more information about the NTPR, visit TransplantPregnancyRegistry.org.

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Patient Story:

NTPR Research Coordinator has Personal Connection to Registry

In 1992, at the age of 31, Faith Carlin of Willow Grove, Pa., received a new kidney and pancreas after suffering from years of diabetes and renal failure. Faith had previously been advised by doctors that she should have children before the age of 30, something she wasn’t in a position to do at the time due to the loss of her first husband from cancer.

Following her transplant, Faith was surprised when her doctors mentioned that she should wait a year before trying to get pregnant. “I was shocked…I never knew that having a baby after transplant was even a possibility,” she says.

Faith remarried several years later and, together with her husband, met with Vincent Armenti, MD, PhD, the founder and principal investigator of the NTPR. He reviewed all of the data with them and they found out that many kidney recipients who were on the same anti-rejection medications as Faith had achieved successful pregnancies. After more meetings with a high-risk obstetrician and her transplant team, Faith was given the OK to get pregnant.

Today, Faith is the mother of two girls, ages 12 and 9. Both pregnancies went smoothly and her new organs functioned beautifully. Her entire experience made her realize that she wanted to work in the transplant field. That realization led her to a job as a research coordinator for the NTPR – the precise registry she consulted more than a decade ago when she was considering pregnancy.

“I feel like I received two gifts from my organ donor – the organs themselves but also my two beautiful daughters,” she says.

NOTE: Faith is available for media interviews

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