Parkinson’s Patients Desperate to Save Medical Tests from the Landfill

Millions of pounds of research on life-changing treatments for Parkinson’s disease are in danger of being abandoned, dealing a severe blow to patients.

Experts warn that the search for a cure or drugs to relieve symptoms could be set back years or never come to fruition if trials are forced to close.

Parkinson’s UK says five active trials of the disease, which affects 145,000 people in the UK, are critically short of participants and face closure.

When the pandemic hit in 2020, these studies had to shut down their sites and put research on hold to keep people safe and redirect staff to the front lines of Covid.

Parkinson’s UK says five active trials of the disease, which affects 145,000 people in the UK, are critically short of participants and face closure.

They have since reopened and resumed enrollment, but have not had enough time to find enough volunteers to ensure they can keep going. Parkinson’s UK and other donors have already poured millions of pounds into the trial, which should find thousands by autumn.

The charity warned that the money “will be wasted” if the lawsuits are closed early. It stated, “Without these trials, important new treatments may be delayed for years or risk never being available at all.”

The UK, which suffers from Parkinson’s disease, spends about £10 million a year on research in the hope of finding drugs that can relieve symptoms or slow the progression of the disease.

Trials play a vital role in demonstrating that new treatments are safe and effective.

The data collected is needed to license new treatments and make them available to people with Parkinson’s disease.

Each of the risk trials looks for people who meet certain criteria, such as those experiencing anxiety, falls, hallucinations, or low moods. Non-Parkinson’s patients are also asked to volunteer for one of them.

A trial of a sticky, medicated fall patch has three months to reach 300 participants, and a trial of a wrist device that can control salivation needs to recruit 3,000 people in four months.

Another is exploring whether an existing drug can help with Parkinson’s hallucinations, while a fourth seeks to better understand anxiety in people with and without the disease.

A fifth is testing a treatment for low mood in Parkinson’s disease and exploring whether it can slow the progression of the condition.

Professor David Dexter, Associate Director of Research on Parkinsonism UK, said: “Trials are limited in time as funding levels are limited and staff costs are the highest.

More than 60,000 people are diagnosed with Parkinson's disease every year.  Neurodegenerative movement disorder can cause deterioration in motor skills, balance, speech, and sensory functions, and there is currently no cure, making controlling its progression a top priority for patients.  Pictured are participants in a Rock Steady boxing class at Friendship Haven in Iowa on June 15th.  They end each lesson with a crowd and repeat their motto: "We are stronger than Parkinson's disease"

More than 60,000 people are diagnosed with Parkinson’s disease every year. Neurodegenerative movement disorder can cause deterioration in motor skills, balance, speech, and sensory functions, and there is currently no cure, making controlling its progression a top priority for patients. Pictured are participants in a Rock Steady boxing class at Friendship Haven in Iowa on June 15. They end each session with a crowd and repeat their motto: “We are stronger than Parkinson’s disease.”

“There are certain recruitment milestones that need to be reached in research or the money and support could be cut off.”

He added: “Over the decades, we have worked diligently to create revolutionary new ways to fight Parkinson’s disease, investing millions of pounds in the development of life-changing therapies with the goal of eventually finding a cure.

“Nevertheless, while these new therapeutics are nearly achievable, they are unfortunately just out of our reach…

‘White tree [more volunteers]these trials are in danger of being closed and we are no closer to developing new treatments for the 145,000 people living with Parkinson’s in the UK.”

He said: “A number of trials have been understandably suspended during the pandemic to keep people safe and redirect personnel to the front lines.

“However, even though they are now up and running again, the recruitment struggle is jeopardizing the millions of pounds invested by Parkinson’s UK and other donors, and with it the hope of helping thousands of patients live their best lives as we continue our search. . for treatment.

Details on how to become a volunteer can be found on the website of charitable organizations. Web site.

‘I ran into a strange figure on the stairs’: Radio legend David ‘Kid’ Jensen reveals Parkinson’s hallucinations conjure up images of people and animals that don’t exist

Television presenter David Jensen described hallucinations caused by Parkinson’s disease when he encouraged others with the disease to join him in a clinical trial.

The 72-year-old television and radio host said she saw a dog “that doesn’t really exist” and “stumbled upon a strange figure on the stairs when she woke up at night.”

The Radio 1 stalwart and DJ nicknamed “The Kid” at the age of 18, when he was the youngest radio host in Europe, has been living with the disease for more than a decade.

He said that hallucinations “are a part of my life in many ways.”

He is encouraging other patients with Parkinson’s disease and Lewy body dementia to join a trial called Top Hat to see if the inexpensive drug ondansetron can relieve hallucinations.

It is funded by Parkinsonism UK and led by University College London with test sites across the UK.

TV presenter David Jensen revealed that he had hallucinations caused by Parkinson's disease when he encouraged others with the disease to join him in a clinical trial.

TV presenter David Jensen revealed that he had hallucinations caused by Parkinson’s disease when he encouraged others with the disease to join him in a clinical trial.

The former Top Of The Pops host said that participation “gave me strength and hope for my future treatment of Parkinson’s.”

He said: “I also want to encourage those who have loved ones with these conditions to get involved in this and other groundbreaking research.”

“Since I was diagnosed with Parkinson’s in 2011, I have found the condition to be full of surprises.

“Many people are aware of symptoms like stiffness and tremors, but there are actually more than 40 of them, including hallucinations.

“While hallucinations are not something that most people identify with the disease, about three-quarters of people with Parkinson’s may experience them at some point.

“The drugs currently available to treat visual hallucinations are less than ideal, as they may worsen Parkinson’s disease symptoms or have serious side effects.”

The clinical trials are funded by Parkinson’s UK and run by University College London with clinical trial centers across the UK.

The Radio 1 stalwart and DJ (pictured at his home in Escher with his wife Goodren), nicknamed

The Radio 1 stalwart and DJ (pictured at his home in Escher with his wife Goodren), nicknamed “The Kid” at age 18, when he was Europe’s youngest radio personality, has been living with the disease for over a decade.

Mr. Jensen added: “Without people willing to participate in the trials, progress in Parkinson’s disease research would not be possible. We can all play our part in finding new therapies that will change our lives.”

Caroline Russell, Managing Director of Parkinson’s UK, said: “Although the most well-known symptoms of Parkinson’s disease are tremors, slowness of movement and rigidity, there are actually more than 40 possible symptoms, including hallucinations, depression and pain.

“That is why we are so grateful to David and his ilk who are participating in trials to help us find a cure.

“Because the Top Hat study is investigating the effects of the already licensed low-cost drug ondansetron, if the study shows significant results, it may be available to people with dementia with Parkinson’s or Lewy bodies who experience hallucinations over the next few years.

“We at the Parkinson’s Center in the UK are proud to fund research into the most promising treatments that bring us closer to a cure every day.”

To find out more visit www.parkinsons.org.uk/research/take-part-research