Researchers move closer to a test that can sniff out Parkinson’s

Quick summary:

• Researchers have developed a pioneering new technique that can identify Parkinson’s based on 'smelly' chemicals known as 'volatiles' found on the surface of the skin.
• This research was inspired by one woman’s amazing ability to smell Parkinson’s.
• This research could lead to a test to help diagnose Parkinson’s accurately, speedily and cost-effectively.

The findings of this research offer hope that a pioneering new test could be developed to diagnose the degenerative condition through a simple and painless skin swab.

The test works by analysing chemical compounds found in the sebum, the oily substance that coats and protects the skin, and identifying small but important changes in people with Parkinson’s.

Professor Perdita Barran, Professor of Mass Spectrometry at The University of Manchester, who led the research, said:

"We believe that our results are an extremely encouraging step towards tests that could be used to help diagnose and monitor Parkinson’s.

"Not only is the test quick, simple and painless but it should also be extremely cost-effective because it uses existing technology that is already widely available.

"We are now looking to take our findings forward to refine the test to improve accuracy even further and to take steps towards making this a test that can be used in the NHS and to develop more precise diagnostics and better treatment for this debilitating condition."

These promising results published today could lead to a definitive test to diagnose Parkinson’s accurately, speedily and cost-effectively.

Amazingly, this groundbreaking research was all inspired by Joy Milne, a former nurse with an exceptional sense of smell.

The woman who can smell Parkinson’s

Joy’s husband Les was diagnosed with Parkinson’s at the age of 45.

Joy noticed a difference in his smell many years before that. But she never considered that the musky smell and the condition might be connected until the couple started meeting other people with Parkinson’s.

Joy said:

"It dawned on me that every person with Parkinson’s that I met had the same unique, musky odour as Les. And I realised it was the condition itself I could smell.

"I was surprised to find that no one had made the connection before, but when I mentioned it to a researcher from the University of Edinburgh he was intrigued.

"He devised a simple experiment to test whether I really could smell Parkinson’s. I had to sniff T-shirts worn by people with and without the condition and I think he was rather surprised when I got all but one correct.

"The only one I got 'wrong' I identified as having Parkinson’s when they were in the control group. But that person came back 8 months later and said he had been diagnosed, so I had actually detected the condition before he himself realised he had it.

"And that’s where everything started. I’m so delighted to have been able not only to highlight this phenomenon to the research community but also to work as part of the scientific team to help them develop a simple non-invasive test."

Towards a simple and accurate test

Clinical lead Professor Monty Silverdale at Salford Royal Foundation Trust recruited 500 people with and without Parkinson’s who provided samples of sebum from their upper backs for analysis.

Using different mass spectrometry methods, 10 chemical compounds in sebum were identified which are elevated or reduced in people with Parkinson’s. This allows scientists to distinguish people with Parkinson’s with 85% accuracy.

Further analysis using high resolution mass spectrometry showed subtle but fundamental changes as the condition progresses.

This means this 'world first' testing strategy is not only useful in diagnosing Parkinson’s but also in monitoring the development of the condition. The skin swab could provide an incredibly important new tool in clinical trials helping researchers measure whether new, experimental treatments can slow, stop or reverse the progression of Parkinson’s.

The team is now seeking funding to further develop the test and explore the potential for using the test to 'stratify' patients.

Why better diagnosis matters

Parkinson’s tends to develop gradually. It may be many months, even years, before the symptoms become obvious enough for someone to go to the doctor.

There is currently no definitive test for the condition. Diagnosis is made by a specialist based on symptoms. They look for things like tremor, slowness, stiffness and balance issues. However, many of the symptoms of Parkinson’s can overlap with other conditions, especially in the early stages when symptoms are more subtle, so it’s not a straightforward task.

This means that getting a diagnosis of Parkinson’s can take time, and some people may be misdiagnosed at first. This period of uncertainty can be extremely frustrating and worrying for people, and delays their ability to access vital treatment and support.

In a recent survey of more than 2,000 people with Parkinson’s carried out by Parkinson's UK, more than a quarter (26%) reported they were misdiagnosed with a different condition before receiving the correct Parkinson’s diagnosis. Read the full results of our poll.

Daxa Kalayci, 56, lives in Leicester and was diagnosed with Parkinson’s in September 2019. She was misdiagnosed several times over 4 years before finally finding out she had the condition.

Daxa said:

"I was misdiagnosed with anxiety, stress-related tremors and told that my problems stemmed from going through the menopause. I embarked on a 4-month cruise across the globe not knowing I had Parkinson’s. Just 2 weeks into the trip, my symptoms worsened and my dream holiday turned into a nightmare. Without confirmation that it was Parkinson’s, which I had suspected for a long time, I was left with unpleasant side effects caused by different medications prescribed to manage my symptoms.

"Despite my diagnosis eventually being confirmed by a DaTscan, a quick and simple diagnostic test for Parkinson’s would have given me the chance to start my treatment earlier and enjoy life a lot more. But instead, I lost so many years not being able to pursue a career as a paramedic or go back to nursing.

"This test could be a game-changer for people living with Parkinson’s and searching for answers like I was. I am so happy with this news because it will mean that in future people won’t have to experience the anxiety of multiple appointments, long waiting times and sleepless nights. The sooner this test is available, the better. Anything that can help people looking for a diagnosis is a bonus."

Working together to find the answers to Parkinson’s

Joy and Perdita have shown what is possible when researchers and people with lived experience of the condition work together.

If you have Parkinson’s or are a partner, carer or family member of someone who does you can make a difference by bringing your experiences to research.

Join our Research Support Network and we’ll send you opportunities to take part and have your say in research.

If you’re a researcher then you have a vital role to play too.

Whatever stage your research, whether you’re lab-based, in the clinic or in industry, we can help connect you to people living with Parkinson’s to inform and shape your research.

Find out more about how we can work together.