Mayo Clinic hosts global ‘hackathon’ to solve medical mysteries
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On Sunday, more than a hundred doctors and specialists from around the world will convene in Rochester to help patients whose conditions have eluded diagnosis.
Mayo Clinic will host the four-day event, known as the “Undiagnosed Hackathon” — a global effort to solve rare diseases that have long gone unexplained. Eric Klee, a co-director, said he’s hopeful that this opportunity to collaborate across disciplines and backgrounds will help participating patients finally get answers.
“You live with this diagnostic dilemma, knowing something’s wrong, but having no idea what it is,” said Klee, who is also a professor of biomedical informatics at Mayo Clinic. “If we can help these individuals, then, you know, it’s life changing for them.”
According to the Wilhelm Foundation, a Sweden-based international organization which started the annual hackathon in 2023 and is co-hosting alongside Mayo Clinic, more than 350 million people are living with an undiagnosed disease — 75 percent of whom are children.
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This is the first time the event will take place in the United States. This year, 125 scientists, clinicians, and AI experts from 30 countries are gathering to help 29 of these patients who have been nominated to participate. Local Mayo Clinic patients, six out of the 29, will be there with their families.
Working alongside global colleagues, teams will re-analyze test results and run new tests where necessary. For patients able to attend in person, the teams can talk to families to learn more. They’ll also explore patients’ gene sequencing using advanced tools to reveal things that standard tests could miss.
“These participants have had the extent of testing that’s available diagnostically, and so now we are throwing additional modalities at their samples or their specimens to try to find answers for them,” explained Cherisse Marcou, another co-director of the hackathon and an assistant professor in laboratory medicine and pathology at Mayo Clinic.
It’s also an opportunity for team members from under-resourced hospitals and research facilities to take advantage of Mayo Clinic’s sophisticated technology and world-class resources.
Marcou and Klee said the ability to collaborate is the core idea behind the hackathon. Breaking down silos and allowing people to work together across disciplines helps them solve these medical mysteries.
“The reason it’s so important to get people together from all over the globe is it gives us an opportunity to learn from each other,” Klee said. “Everybody comes with different perspectives. Everybody comes from different potentially resourced institutions or environments. Some are low- and middle-income countries. Some are high-income countries. But we all learn different things from each other.”
The collaboration appears to have paid off in the past. Last year, the teams solved more than a third of the cases in just 48 hours. They made significant progress on several others, Klee said. He’s hopeful that they’ll have similar success this year.
While the hackathon is closed to the public, a rare disease symposium is being held on Wednesday that will be open to anyone.
Adults living with an undiagnosed disease — or parents of a child with an undiagnosed condition — who have already undergone whole genome sequencing without receiving a diagnosis can now nominate themselves or their child to be included in the next “Undiagnosed Hackathon.” A clinician can also make the nomination.
