SRTR reports and finding a transplant center

For those of you new to the transplant listing process it is helpful to know about SRTR (Scientific Registry of Transplant Recipients) and their twice annual reports on transplant center programs. They can be found at www.srtr.org. They have been around for many years but recently they have revised their reports to make them more readable and this year they began a new 5-year Outcome Assessment rating system for long-term graft and survival outcomes for each center. The maximum rating is 5 (better than expected), then 4 (somewhat better than expected), 3 (as expected), 2 (somewhat worse than expected) and 1 (worse than expected). The site allows you to search for centers based on geographic distance, transplant volume, transplant rate (% who get transplants for every 100 per year on waitlist), and outcome assessment (the 5-tier rating). It is an extremely useful tool and much easier to use than in prior years. There are also summary reports that can be scanned quickly as well as very detailed full reports on each center. They are updated every six months in June and December.

A couple of cautionary notes from my experience: I would never choose a transplant center solely on the SRTR ratings or data. The ratings are supposed to be adjusted based on the level of risk an individual center is expected to have based on how stringent their requirements are to get on the list, but the criteria between different centers is so different that I'm not sure they really can make such an adjustment. Centers who do more transplants every year (the volume ranges from only a few each year in some centers and more than 300 per year in the busier ones) and some do more living donor transplants than others. There are many variables that go into an outcome rating so the comparison is never equal. I've also found the waiting time estimates on these reports to be outdated by the time they are published. The only way to find out average wait times is to speak directly to the individual transplant center. These times are changing rapidly under the new rules and until each center does its own annual internal review the estimate they give, even on their trans[plant center website, may be way off.

What matters most, at least from my experience, is the feel you get for each center at the evaluation and after you are listed. How many hassles were there getting on the list? Were they thorough enough in their requirements or perhaps much more strict than seems justified? Do they follow up, return phone calls, keep track of the test results sent to them? How willing are the coordinators to keep in touch and be helpful? What kind of requirements do they have for follow-up after the transplant? Do they require you to make frequent visits to the center or are they willing to let you get routine labs done near home? Do they require routine biopsies after a transplant or only when blood tests show signs of rejection? There are risks to biopsies and I do not wish to have them just for the sake of having them. What are the options for steroids and anti-rejection drugs?

If anyone has any other advice, please chime in. In the end it comes down to your gut feeling about each center, how long you are willing to wait, what your insurance will cover, and how much you are willing to travel. Like I said, I would not go just by the data on the SRTR reports, but they are helpful.