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Off medication in Parkinson's Disease: clinical trial participant experiences

Many clinical trials testing new therapies for Parkinson’s disease require participants to undergo assessments when they are ‘off’ medication. In this video, we explain what ‘off’ medication assessments involve and introduce guidance on how to manage those assessments. 

What are assessments in ‘clinically defined off’?

During clinical trials studying Parkinson’s disease you may be asked to undertake a range of assessments of your physical symptoms and/or scans of your brain. In most cases you will take your medication as normal for these assessments but for some trials you may be asked to come in ‘off’ your medication. ‘Clinically defined off’ is a medical term for when you have not taken your medication for at least 12 hours. ‘Off assessments’ are the tests that take place during this ‘off medication’ phase. You may need to withdraw from medication for longer periods of time depending on the trial, although this is less common.

Why do I need to be in ‘off’ on a trial?

Undertaking assessments in ‘clinically defined off’ provides additional invaluable information about how your Parkinson’s disease is progressing and helps researchers understand whether the intervention you are testing is helping your symptoms, or slowing the progression of your Parkinson’s.

What is it like being ‘off’ medication?

Everyone has a unique experience of their Parkinson’s and in the same way, each person will experience ‘clinically defined off’ differently. Some people find it an interesting experience, being able to see for themselves how beneficial their medications are for them and how their disease is progressing. They also find it relatively straightforward to manage during this time. Some patients find that the first experience of ‘off’ can be a shock, as you see how much your Parkinson’s has progressed. Patients report feeling more vulnerable during this time and everyday activities may be harder. It can also be distressing to anyone who is accompanying you to provide support.

You may have experienced periods of ‘off’ yourself already, however, since this will be a longer period without your medication it may be more severe.

How does this work in a clinical trial environment?

If you are doing assessments that measure your ability to move and walk, you may be asked to do the assessment in ‘off’ and then repeat it after taking your medication in ‘on’. If you are having a brain PET scan you would normally only do this once during an assessment session and you will be told beforehand if it needs to be ‘on’ or ‘off’ your medication (see video/leaflet on brain scans for more information).

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