Clinical Trials - Parkinson's Research Needs You

“Could do better” - that was the verdict of a recent review of the UK’s performance when it comes to staging clinical trials. The report by the drugs industry body the ABPI found that the number of clinical trials in the UK fell by 41% between 2017 and 2021. You could blame that on the Covid pandemic - except that we are falling behind other countries. Over the same period the UK fell from 4th to 10th place in the league table of countries staging phase three trials, the final test before drugs are ready for the market.

But when it comes to Parkinson’s, the community is not just sitting back and watching this decline. A new campaign Parkinson’s Research Needs You has been launched by the charity Parkinson’s UK to try to recruit more people to clinical trials.

The charity’s head of research communications Claire Bale told me that there was an untapped pool of people eager to take part in trials, if only they were told about them:

“We just know there's not enough people taking part and it's usually not to do with the fact that people don't want to, it's more that they're not aware that those opportunities are out there, or how to access them.”

A great website allows you to put in your postcode and find out about trials and surveys which might be suitable for you. The charity is highlighting four trials:

• ASPro-PD is among the most high profile trials in that it involves a drug that could produce a real breakthrough by slowing the progression of Parkinson’s. The drug is a repurposed cough medicine called Ambroxol and the researchers are looking for 330 people with Parkinson's aged between 45-75 and diagnosed within the last 7 years. Ambroxol is expected to be particularly effective for people with a particular genetic mutation, so potential participants will first have to undergo a genetic test

• Can-PDP is an investigation into whether cannabidiol - a compound found in cannabis - can be used to safely treat psychotic symptoms of Parkinson’s. The trial is looking for 120 people with Parkinson's who experience psychosis such as hallucinations and delusions.

• The Cue Band is a wristband designed to deal with a symptom where people with Parkinson’s produce excess saliva and drool. It is another device using a cueing technique, in this case sending vibration prompts, and the hunt is on for 100 people who experience this symptom and would like to try the Cue Band at home.

• Neuro Digital is simply a survey designed to help researchers investigate how factors like age and health influence how people use digital health technology. They are looking for 200 people with Parkinson’s to complete a 30-minute questionnaire, online or by post.

One big problem with clinical trials is a lack of diversity amongst participants. “We know for a fact that there's very limited representation of people from Black and Asian and mixed race backgrounds in Parkinson's research,” says Claire Mace. “We want to change that.” In its campaign Parkinson’s UK will feature two members of its steering group from an Asian background, and will hold events in various communities to raise awareness

The problem, as with so many areas of Parkinson’s treatment, is all about communication. We have found in the reaction to our Movers and Shakers podcast many people who feel isolated - either because they’ve been ignored by the health system or because they are too embarrassed to talk about a condition they somehow see as shameful.

The more we find out about Parkinson’s , the more complex and variable a condition it seems to be, with a host of different symptoms which may have a different impact on people depending on their ethnicity. There is still a lot to learn - and that is why it is so important to get as wide a cross-section of the community as possible taking part in the hunt for new treatments.