THREE patients at the John Radcliffe Hospital are among the first in the world to receive a pioneering experimental treatment for Huntington’s disease.

The inherited genetic neurodegenerative disease typically begins in mid-life and gets progressively worse over time.

It results in difficulties with controlling movement and dementia, and can cause significant behavioural problems, progressing to severe disability and death over 20 years.

Associate Professor and neurogenetics consultant, Andrea Nemeth, who is leading the Oxford University Hospitals NHS Foundation Trust part of the trial said: “Living with Huntington’s disease can be very challenging for our patients and their loved ones.

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"Children of affected individuals have a 50 per cent risk of inheriting the same disease, meaning that Huntington’s has a profound effect on whole families.”

Huntington’s is generally considered to be a rare disease, but there are around 400 people affected in the Oxford area.

The Generation HD1 trial being conducted at the John Radcliffe is investigating a compound that is attempting to limit the production and lower levels of the toxic protein that kills nerve cells and causes the disease.

One of the patients taking part in the trial is Danny Atkins, a father of five who was diagnosed with the disease nearly a year ago.

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The 39-year-old said: “My mother passed away with Huntington’s last year.

"She came from a large family of 13 children, so Huntington’s is very prevalent in the family."

He added: “I started noticing with myself things taking me longer than usual, struggling a bit with organisation.

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"So how it affects me at the moment is quite frustrating, because things I could do before are not quite so easy."

He continued: "After a day’s work you feel quite tired, having to concentrate on doing things that normally you’d do without even thinking.

“I’ve been following this trial for several years. I never thought for a second I would get onto the trial, and even better, Oxford, which is now my local centre, is doing it here for the first time. Everything fell into place quite nicely."

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As part of the trial an experimental compound is injected directly into the spinal fluid at the base of the spine.

Professor Nemeth explained: “We hope that this compound will then reach the areas of the brain that are affected, and so reduce the amount of toxic protein in those cells.”

Patients will receive the drug every two months for two years, and will be assessed frequently, both clinically and using MRI scans and other biochemical tests. They will also wear innovative smart-trackers that monitor other aspects of their daily lives.

If successful, the trial could have implications not just for Huntington’s but also genetically similar conditions.