Heart Association Launches Transplant Data Initiative
AHA says a more robust database can accelerate innovation and address post-surgery complications faster.
The American Heart Association (AHA) has launched a new initiative designed to improve data-gathering and innovation around heart transplants.
The heart-transplant research network, announced June 3, comprises 15 research centers across the United States. AHA will set up a new database intended to gather more robust data around heart transplants, particularly around the recovery of transplant patients. AHA will also provide grants to research centers to better investigate treatments for those patients, particularly in cases of infection or transplant rejections.
According to AHA Chief Science and Medical Office Mariell Jessup, M.D., FAHA, research around patient responses to heart transplants have lagged, largely due to a perception that there are few options if a patient fares poorly after the procedure. “It is a very unforgiving patient population,” she said. “If something goes really wrong with a kidney transplant, there’s a backup plan and it’s called dialysis. With a heart transplant, we don’t have a backup plan.”
A release about the initiative noted that, as a result, the field lacks the research to develop better interventions: “Many clinical guidelines are still based on expert consensus rather than robust, evolving evidence.”
Last year 4,500 heart transplantations were performed in the United States, but more than 3,700 people remained on the waiting list.
Jessup noted that in recent years, more interest from patients and donor families, as well as from research facilities and pharmaceutical companies, has made the new initiative a worthwhile pursuit. And she said she is hopeful that the first round of grants will attract more research partners.
“We’re taking ownership on the initial organization of the network, and we’re hoping that we will interest pharma or other health tech companies to get interested in this network, and we’re hoping that there’ll be some governmental agencies that might be interested in this as well.”
A top priority in the early stages of the initiative, Jessup said, is synchronizing data across the participating research facilities. From there, she’s hopeful that collecting information at scale can help identify more effective treatments for issues such as primary graft dysfunction. “Right now, most of what we know comes out of only a few centers,” she said.
More data can also potentially help AHA leverage AI for solutions. “We hope that it’s a platform where we can really test out innovative ideas—is there an ability to detect rejection noninvasively? Can we detect other aspects through wearables?” she said. Better understanding of issues can help lead to treatments that can address the demand for transplants. According to AHA, last year 4,500 heart transplantations were performed in the United States, a record, but more than 3,700 people remained on the waiting list.
The key element of the initiative’s success, Jessup said, was the excitement among the multiple partners across disciplines to make it happen.
“Their level of enthusiasm and their willingness to do this tells the story,” she said. “There are huge gaps that we need to answer, and they’re willing to work collaboratively in a very tough field. I can’t tell you how many emails I’ve gotten from people saying, ‘Oh, thank God the AHA is doing this. Thank goodness we can be part of it. We’re so thrilled. This means so much to us.’”

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