Is the NHS in the drug trial slow lane?

The struggle to fill places on a major Parkinson's trial

Are you between 30 and 80, have been diagnosed with Parkinson’s in the last couple of years but have yet to be put on any medication? Then an important clinical trial needs you - and in a hurry. The American pharmaceuticals giant Biogen is staging a phase 2b trial of a drug called BIIB122 which it is hoped might slow the progression of Parkinson’s and has been trying to recruit 640 people around the world to take part.

The Luma trial - thank goodness they’ve chosen a snappier name for it than the one the drug boasts - is important because it is another attempt to find that Parkinson’s Holy Grail, a treatment that is disease modifying rather than one which just masks the symptoms. So when Re:Cognition Health, the company trying to recruit British people for the trial, got in touch with the Movers and Shakers podcast team asking if we could spread the word we were happy to help.

While the podcast is off air at the moment - we return in early February - our Facebook group is going to publicise the trial and this link will take you to an application form. You will have to hurry - applications close at the end of February.

But that deadline has been extended from the original one of December 31st and when I inquired further a sorry tale emerged of the UK under-performing when it comes to clinical trials. George Robinson, Director of Global Patient Engagement at Re:Cognition Health, told me that the company was only brought in by Biogen in mid-December when it became evident that a recruitment programme that had been running throughout 2024 was falling far short of its UK target.

According to Mr Robinson recruitment through the NHS has been a struggle as an indirect consequence of what we at Movers and Shakers have been banging on about for ages, a shortage of neurologists. His theory is that doctors who even suspect that patients may have Parkinson’s know that they won’t get another chance to see them and confirm their diagnosis for at least six months. So they put them on medication straight away, partly because a patient’s response to levodopa and similar drugs can reveal whether they do have Parkinson’s. As the trial requires participants not to have started on medication, finding suitable people proved nigh on impossible. Of the 555 people recruited around the world so far, just 26 have been enrolled at seven centres across the UK.

(It has to be said not everyone buys George Robinson’s analysis. A source in the Parkinson’s research world told me most doctors put people with suspected Parkinson’s on medication at once because they believed it would give them a better quality of life.)

How then could Re:Cognition Health make a difference? It turns out that it is a brain imaging company specialising in helping researchers into both Alzheimer’s and Parkinson’s. For more than a decade it has been using PET scans to help identify people with early stage Alzheimer’s to take part in drug trials.

Now it is doing something similar for Parkinson’s drug trials where there is a focus on people at the very earliest stage of the disease. In fact, the company is offering people with what may be symptoms of Parkinson’s a shortcut to the. certainty of a diagnosis. Because the drug company will pay for a scan as part of the trial recruitment process, they don’t have to wait six months for it on the NHS - and then they are in the system and can get referred to a specialist.

George Robinson explains that rather than using the standard NHS route to recruit trial participants it tries to reach them directly via Facebook, radio adverts and webinars telling people what the early symptoms of Parkinson’s or Alzheimer’s look like. He says that Biogen has praised Re:Cognition for identifying six potential participants within days of being appointed

To anyone impatient for progress in the treatment of Parkinson’s the whole lumbering bureaucracy of clinical trials is hugely depressing. Why, for instance, did it take until mid-December, two weeks before the original deadline, for Biogen to realise something was going wrong in the UK and call in Re:Cognition? It is also a concern that recruitment for the Luma trial has proved tougher than elsewhere.

In 2022 the Association of the British Pharmaceutical Industry warned that the UK was plunging down the league table for late stage clinical research. If we can’t efficiently supply people to take part in trials then that decline will accelerate, meaning that when new drugs are discovered we will be further back in the queue for them. So if you do fit the bill for the Luma trial or any others please do apply!