rsz joy

Parkinson's Disease SuperSmellers study features on leading BBC show - and you can help!

Date: 21 December 2017

Joy Milne has an incredible sense of smell that is able to recognise Parkinson's disease on the human body. Her story has received lots of media attention - and has now featured on The One Show on BBC 1 (21 December 2017). 

You can watch the piece at 18mins 50secs here

Joy detected Parkinson's on her husband, Les, 10 years before he was diagnosed by doctors.

Now she is using her ability to help researchers develop a diagnostic test for the condition.

But researchers also need other people to take part in a clinical study inspired by Joy sense of smell. Read how you can help below:  

The Skin Metabolites in Parkinson's Disease research study

Through our outreach activities in the Parkinson's disease (PD) community we have serendipitously identified a woman who claims to be able to detect a unique body odour from people with PD.
This woman has an extremely sensitive sense of smell and, from a series of questions and answers, she has made it clear that people with PD do not simply have increased body odour, but different body odour to her nose.

Importantly, from her own experience she detected a change in body odour in a family member many years before the onset of motor symptoms, and the eventual diagnosis of PD.

The lady in question has been tested on two occasions with samples from people with PD and people without PD. The samples were gauze swabs rubbed on the skin.

The “expert smeller” correctly identified the samples from people with PD in 12/12 individuals from sniffing the swabs. The unique odour was easily detected in these swab samples by our expert smeller.

Aim of the Study:

This study aims to collect further samples to enable further testing. The overall aim is to see if we can detect and identify compounds present on the skin of PD sufferers that will provide a route for early diagnosis of the disease. To deliver this aim, we will need skin samples from people with and without PD.

Design and methods used:

Participants are invited to clinic or seen at home for a single visit in which sebum samples are collected using a gauze swab to the upper back and forehead. Participants are asked to provide some basic demographic data.

Participants are asked not to shower on the morning of the visit and to refrain from using face creams and make up on the sampling areas to ensure the best quality sample.

Skin Metabolites via Gauze swabbing:

This is already applied in clinical/analytical settings as an easy-to-use and reproducible method for extraction of chemical information from the skin. Sampling involves each subject being swabbed on the forehead and/or upper back with a medical gauze material. These samples will then be sent for analysis, extracted with a suitable solvent and subsequently analysed.


Patient and public involvement:

The study protocol has been assessed by lay reviewers with PD.

We will seek to publish our data in the scientific literature. We will also publish reports on the Parkinson's UK website and keep our participants informed of findings as the project progresses, via three monthly lay reports. We will use the press offices of the Universities of Manchester and Edinburgh to inform of significant findings in this Parkinson's UK funded project.

In order to make sure our work stimulates future research we aim to:
· Publish our work in academic journals
· Present our work at conferences attended by academics


How can I get involved? 

We are recruiting to the study at a number of sites across the country in Greater Manchester, North East and North Cumbria, South West Peninsula, North West London, North Thames, Eastern, Yorkshire & Humber, West of England and Scotland. Recruitment is actually on hold for the moment, but will be resuming in early 2018. 

If you would like further information about the study, or would be interested in taking part, please contact crngmcomms@mft.nhs.uk or call 0161 701 5604

  • Summary:
    Joy Milne has an incredible sense of smell that is able to recognise Parkinson's disease on the human body. Her story has received lots of media attention - and has now featured on The One Show on BBC 1 (21 December 2017).
  • Include on homepage (one at a time):
  • Areas of the site this news is applicable to:
    Research
  • LCRN:
    Greater Manchester
  • Year of publication:
    2017
  • Specialty:
    Dementias and Neurodegeneration - DeNDRoN
  • News filter:
    NIHR in your area

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