Irish medtech company Akkure is looking to create “medical digital twins” of Irish people to help deliver cures for life-threatening illnesses.
The Dublin-based company is initially targeting people who have conditions including multiple sclerosis, motor neuron disease and cancer.
The digital twin is a unique virtual copy of a person’s entire genetic make-up but it remains in the ownership of the patient, stored securely and accessed via blockchain.
This, Akkure co-founder and chief executive Prof Oran Rigby says, is unlike other groups like commercial gene sequencing businesses and ancestry tracing businesses which are making a great deal of money from using people’s data without their permission.
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By encouraging patients with certain undertreated or untreated conditions to have their genetic make-up mapped digitally, the company hopes researchers can use the combined data of a group of patients – with their permission – to help develop a cure or treatment for the conditions.
“By lending access of their precision medical data to ‘Project Akkure’, patients have the opportunity to contribute to an initiative that has the potential to revolutionise the way new therapeutics are developed for their particular disease,” Prof Rigby said.
“This is the first time a project like this has been undertaken anywhere in the world using this technology and we are hugely excited about it.”
To kick-start the programme, Akkure has said it will subsidise the cost of the genetic mapping for the first 100 patients with each particular condition. That, the company says, will bring down the cost from €400 to €100.
Akkure said it hopes that, if sufficient numbers of patients come forward, it can secure sponsorship form pharmaceutical companies to push down the costs of further studies.
“In order for researchers to be able to find new cures, they need access to large amounts of DNA data based on specific patient communities,” said Prof Rigby, who set up Akkure in 2019 as a disrupter to existing clinical trial structures.
Oncologist Prof John Crown, who is chairman of Akkure’s medical research board, says the future of precision medicine involves deploying our DNA data at scale to establish why people get ill, how disease affects them, and how to cure them.
“We now have the technology to empower patients to be part owners of this process, and I would urge people with active medical conditions, their families, and relevant charities to register their interest in ‘Project Akkure’ and join us on our journey,” he said.
