There’s a wide difference among the more than 60 pediatric transplant centers in the United States. Some do a few transplants a year; some do dozens. Some have been doing transplants for decades; others have less experience. Some have expertise in all types of pediatric transplants and the diseases they cure; others specialize in a few. And, not surprisingly, outcomes vary as well.
With such different profiles, the task of choosing a transplant center and team that meets your family’s unique needs for this lifesaving procedure can seem daunting. But there’s help. One of the best tools available is a report on nationwide transplant center performance, updated every six months by the Scientific Registry of Transplant Recipients (SRTR). The SRTR is an independent, data-driven tool that will help you choose a transplant center.
What is the SRTR?
The Scientific Registry of Transplant Recipients (SRTR) is a database that is managed under contract with the U.S. government as a trusted resource for epidemiological data and statistical analyses regarding the status of solid organ transplantation and the transplantation system in the United States. SRTR seeks to provide information that is accurate, clear, and timely for use by the public, the Department of Health and Human Services, the Organ Procurement and Transplantation Network/United Network for Organ Sharing, transplant programs, organ procurement organizations, transplant candidates, transplant recipients, living donors, and donor families.
One of the services the SRTR provides is its comparison and ranking of high-level outcomes of America’s transplant centers. The SRTR provides data for both adult and pediatric transplants. You can use it to make apples-to-apples comparisons of transplant centers around the country.
What is the Importance of SRTR Data?
You can access the SRTR database online at srtr.org–and you should! Why? Because it is based on independent, verified data and is the best public source of consistent information about outcomes.
The kind of information available from the SRTR database is important to the decisions you’re making. It includes outcome assessments and rankings of transplant centers based on patient survival, graft survival, volume, and other factors.
Outcome assessments are reported in three tiers: “Better Than Expected,” “As Expected,” and “Worse Than Expected,” compared to national norms. Recently, the SRTR has introduced a new five-tier outcome assessment system that gives more detailed and refined rankings of transplant centers. You can sort this data by outcome assessment, volume, distance, transplant volume, and transplant rate.
What SRTR Data is Most Critical to Compare?
Perhaps the most important statistics are patient survival and graft (organ) survival–a statistic that indicates the likelihood of the need for retransplantation. Obviously, you want to choose a center that has a high record of success in both areas. After outcome, volume is the next most important factor. While there are more than 60 centers doing transplants, most of them are doing them in relatively low volumes. Higher volumes mean that the outcomes statistics are deeper and more indicative. It also means that the center has more experience.
What’s New in the Latest Update?
The SRTR updates its information in January and June each year. The Hillman Center for Pediatric Transplantation at UPMC Children’s Hospital of Pittsburgh ranks consistently at the top of the list. In the January 2020 data release, the SRTR ranked UPMC Children’s highest out of 62 total centers in the United States for pediatric liver transplant outcomes. UPMC Children’s also ranked first in outcomes among the 29 centers that perform live-donor pediatric liver transplants. In the most recent update, released in June, UPMC Children’s was ranked no. 1 in several categories for 100 percent patient and graft survival, including one-year living-donor liver transplants. Our heart transplant outcomes are also very strong and ranked no. 1 among all centers for three-year patient and graft survival, also 100 percent.
What Should Parents Consider Beyond SRTR Data?
While SRTR data tells an important part of the story, it doesn’t tell the whole story. There are other factors families should consider:
- Long-term outcomes, beyond three years. SRTR doesn’t track this important statistic. The exceptional long-term results at UPMC Children’s are verified over a 30-year+ history of nearly 1,900 pediatric liver transplants.
- Types of pediatric liver disease. Our experience includes 70-plus transplants in children and young adults with maple syrup urine disease (MSUD)—more than any other center in the U.S., while achieving 100 percent patient and graft survival since our first MSUD transplant in 2004. We also have performed more than 350 transplants for children and young adults with metabolic liver disease—more than any other transplant center, including adult facilities.
- Living donor transplant experience, which points to expertise in transplantation and organ availability. Our record includes more than 160 living-donor liver transplants since 1997. In the last five years of recorded data (2011 to 2016), UPMC Children’s has performed more living-donor liver transplants than any other pediatric liver transplant center in the country. We have also performed 18 domino liver transplants, in which donor and recipient exchange organs—more than any other center in the nation, with 100 percent patient and graft survival.
- Broad transplant expertise, an indicator of skill in transplantation surgery, care, and immunosuppression. In addition to liver, UPMC Children’s transplants bone marrow, heart, intestine, kidney, lung, and pancreas.
- Research and innovation, an indicator of leadership and expertise. UPMC Children’s has developed innovative therapies for previously fatal liver and intestinal disorders. Our pediatric living-donor liver-transplants are a lifesaving alternative to the national cadaver organ shortage.
- Geographic coverage, an important factor if you will need to travel. Children’s is the first and only pediatric transplant center in the nation to expand the geographic reach of its program beyond its home base in Pittsburgh through a partnership with the University of Virginia Children’s Hospital in Charlottesville.
- And of course, experience. As the nation’s first pediatric hospital with a transplantation program, Children’s has been at the forefront of pediatric transplantation for over 30 years. We have performed more pediatric liver transplants than any other center in the United States while achieving patient survival rates that are consistently among the best.
Choose With Your Head–And Your Heart
We know that this may be one of the most challenging choices your family will ever have to make. Tools like SRTR data can help demystify the experience and match you with a center that meets your unique circumstances and needs. Whatever team you choose, make sure you connect with a team like the one at UPMC Children’s, who can walk with you through this life-changing experience and support your family every step of the way.
Additional Resources:
Scientific Registry of Transplant Recipients
Liver Transplant Statistics and Outcomes, Children’s Hospital of Pittsburgh of UPMC