Patients with same diseases sought in ‘digital twin’ cure research
Up to 100 patients with the same disease are invited to have their medical ‘digital twin’ created – a replica of their individual genetic makeup.
he goal of the project, involving virtual copies of each individual, is to generate genetic data from people with the same condition to research potential cures and technologies to help them.
The “Find Akkure” project is led by medical technology company Akkure Genomics, which employs 20 people in the Nexus building in UCD.
Dublin-born Professor Oran Rigby, an intensive care and surgical consultant, said the twin project was the first of its kind in the world.
“For researchers to find new cures, they need access to large amounts of DNA data based on specific patient communities,” he said.
“By studying this, researchers can unlock new insights into therapeutic targets or new treatment options for chronic diseases.”
Professor Rigby was inspired to start the business when a close relative of his was diagnosed with multiple sclerosis (MS) and, despite the best efforts of doctors, his condition was still deteriorating.
He saw the importance of “digging into the fundamentals of disease at the genetic level” and creating precision medicine.
The participants in the digital twin project will initially come from people who share a cancer or a neurological disease such as MS, Duchenne muscular dystrophy, motor neurone disease or epilepsy.
The mission is to “cure disease one genome at a time.” You have to start somewhere and you can’t boil the ocean”.
Creating a medical digital twin costs €400, but participants will be offered this one for €100. The hope is that a particular disease support charity can get involved on behalf of the members.
Professor John Crown, cancer specialist and chairman of the company’s medical research council, said: “The future of precision medicine will be to deploy large-scale DNA data to determine why people get sick, how disease affects them and how to cure them.
“We have the technology to allow patients to be co-owners of the process. I urge people with active illnesses, their families and relevant charities to show interest.
Professor Rigby said his company would house the data in a patient-controlled storage platform.
“Patients decide which researchers or pharmaceutical companies can access the information and for what,” he said, adding, “We allow patients to share their data if they want to. They control it and they own it.
He said the information is entirely under the control of the patient. They determine where their twin is shared and “we are the infrastructure that enables it”.
Asked about security, he said the data is stored on Microsoft‘s Azure Cloud Platform and “we use blockchain to authorize access and use dynamic smart contracts that the patient controls at every stage to authorize who can access the data.”
“It’s a combination of advanced technologies,” he added.
They start with cancers and neurological diseases, but “ultimately we think there’s really a role here for a whole range of chronic diseases,” Professor Rigby said.
“We work in partnership with the Royal College of Surgeons and Future Neuro who are doing amazing work across the whole area of neurological disease.”
Patients, families or charities wishing to express interest can log in at akkure.com/join-findakkure-project