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I took part in a Research Study today

A little while ago a protocol which set out to investigate the claim that a lady could tell if someone had Parkinson's disease by their smell landed on my desk for approval. 

Later on I saw a TV programme* about this lady who nagged her husband for about 5 years that he did not wash or clean his teeth properly and had body odour.  When he was given a diagnosis of PD they attended a day centre where she found that other people attending also had the same smell.  A visiting PD Specialist gave them a talk and she asked him about their smell.  He did not know how to answer her but contacted her later to find out more, and they conducted a small experiment.  Six healthy patients (controls) and 6 patients diagnosed with PD were asked to wear a white T-shirt and then she smelled the T-shirt (around the back of the collar and top of the back) to see which were the PD patients and which the controls.  She correctly identified all 6 of the PD patients, and said one of the others also had the smell.  This in itself is quite startling and when some time later one of the controls was diagnosed with PD, scientific interest was understandably piqued.  The T-shirts were then analysed chemically and it was found that thousands of molecules made up this sebum; so they hypothesised that if the molecules that made up the PD smell could be isolated then potentially a simple skin test analysis could be developed into a diagnostic tool - evidence to warrant a larger control trial. 

So where do I fit in?  I have witnessed the effects of Alzheimer’s disease in my wider family.  Both PD and AD have a devastating effect on the patient who disappears before your eyes and leaves a facsimile of the person they were and the family struggling to understand and cope.  Community NHS services are over-stretched already so if I can be of any assistance in finding either a cause or a treatment that will stop these diseases or the burden on families and the NHS then count me in.  Luckily I fitted the inclusion criteria as a healthy control to an age and gender matched PD participant. 

As a research study it is a good example of a simple idea in action.  The test procedure involves having a piece of gauze stroked firmly over the skin of your upper back, or a piece of sellotape being put on the skin and then sharply removed or a small tube being pressed firmly into the skin so that a sample of the sebum (the oily surface of the skin) is taken. 

Our Trust is taking part in the gauze swab procedure, which takes seconds, less time than having a blood test and is a lot less painful, with no attendant risk of infection or bruising.  If the analysis is successful and reliable, having a swab test would save an awful lot of money, time, and stress for the family and patient. 

Currently diagnosis cannot be made, or any therapeutic intervention prescribed until the patient actually has the disease.  If there was a simple screening test, diagnosis and therapeutic intervention could be made much earlier which would improve quality of life for both patient and family.  However, it cannot be validated as a diagnostic procedure unless the results can be shown to be statistically significant. 

It is recognised that a Randomised Controlled Trial is the "gold standard" in terms of testing reliability.  Where a group of people diagnosed with the disease or disorder is randomised to treatment A or B.  Unfortunately an RCT is not appropriate in this case as the goal is to diagnose PD and our participants already have been diagnosed PD.  Therefore the next best option is to match the PD patient for age and gender and I was given the opportunity to be aged/gender matched to a diagnosed participant. 

The researcher sent me an information sheet which described why the study was necessary, and what I should expect when I took part.  When we met for the appointment, he talked through the procedure to make sure I understood what was being asked of me, and I signed a consent sheet to confirm that I had read the information sheet and understood what he had explained.  He then asked me a few simple questions about me; whether I had been diagnosed with PD and what medications I take, my height and weight, then rubbed 2 pieces of gauze across my upper back, one on the left side and one on the right and packed them up ready to send back to the Chief Investigator's research team for analysis. 

That's it... ten minutes of my time which I hope very much will help to develop a simple, inexpensive test to diagnose Parkinson's disease.  The next thing to do is to discover its cause and a drug therapy to cure it - or at least reliably control the symptoms....