Parkinson’s. It’s time to get personal.

If you give 100 people with Parkinson’s a drug, half may benefit but the other half may experience severe side effects. Overall your trial has failed, but does this mean your drug is useless? Or does it actually mean that you’ve actually tested it in the wrong people?

A more personal approach…

Personalised medicine has the potential to transform the way we look at and tackle Parkinson’s. The simple concept behind personalised medicine is that we become smarter at identifying the people who will benefit from different treatments.

Currently we treat Parkinson’s as if it’s one condition. We’re starting to realise that there may actually be many different forms. We therefore can’t rely on a ‘one size fits all’ approach to treating it. Instead of treating all people with Parkinson’s the same, a personalised approach would help us give the right treatment, care and support to each individual based on their particular symptoms and how their condition is likely to develop.

Personalised medicine is currently most advanced in cancer. Rather than treating tumours based on where they grow in the body, doctors can now choose the correct treatment based on the genetic fingerprint of the cells inside the tumour.

This has revolutionised the treatment of many cancers and led to much more targeted treatments that not only improve survival rates but also come with fewer side effects than traditional chemotherapy. One of the first examples is trastuzumab, better known as herceptin, a drug that blocks the HER2 receptor which becomes overactive in some types of breast cancer. Women with breast cancer can have a test to see if they have overactive HER2 receptors and if the drug will be useful.

So how do we make Parkinson’s treatment more personal?

The first step towards delivering truly personalised treatments for Parkinson’s is to work out how many different types of the condition there are, and how they present and progress. This requires a huge amount of carefully collected data — and it’s exactly what we’re doing through two of our largest projects: Tracking Parkinson’s and the Oxford Parkinson’s Disease Centre. Both projects are studying Parkinson’s by closely monitoring people who have recently been diagnosed and collecting information about every aspect of the condition as it develops over time.

Dr Michele Hu is leading a Parkinson’s UK team at the University of Oxford which, in 2010 began recruiting participants who’d recently been diagnosed with Parkinson’s. Now there are more than 1,400 people participating — including people with Parkinson’s, relatives, unrelated healthy volunteers and people with REM sleep behavior disorder. People with this condition act out their dreams and we know they are much more likely to develop Parkinson’s.

“The special thing about our study, and the Tracking Parkinson’s project, is that we’re collecting incredibly detailed information from lots and lots of people with Parkinson’s. And because we’re working extremely closely with our colleagues in the Tracking Parkinson’s project, the two studies are very closely matched which makes them even more powerful.
“We’ve now been collecting data from our participants for a couple of years and it’s already beginning to reveal some fascinating insights into Parkinson’s.
“We’ve discovered that there are differences between men and women who have Parkinson’s. Men are more likely to experience problems with memory, postural hypotension (dizziness on standing) and sleep problems. While women tend to experience more problems with posture and balance.
“Even more excitingly, we think that we are beginning to be able to separate the people with Parkinson’s in our study into distinct groups based on their symptoms and how the condition is progressing.”
Dr Michele Hu

People powering research

Without the thousands of people with Parkinson’s and their loved ones who take part in this research, personalised medicine would remain an impossible dream. Lucy was diagnosed with Parkinson’s at the age of 38 and moved to Oxfordshire shortly afterwards with her husband Angus and their two cats. Now both Lucy and Angus are taking part in our Oxford study and here they explain what motivated them to get involved:

“I decided to take part in the study because I felt I had an overwhelming responsibility to help. In 30 years’ time I don’t want to be complaining that there is still no cure for Parkinson’s, knowing that I could have taken part and didn’t.
“The experience has been fascinating and thorough, and has helped me understand my condition a bit more, as I am still getting used to it. All of the staff were positive and friendly, and having recently moved to the area, taking part provided another means of support.”
“I didn’t hesitate for one minute at taking part in the research study. I now have a far better understanding of Parkinson’s and an appreciation of what Lucy has to deal with on a daily, even hourly basis. Not only is the study interesting but it’s a journey we can take together.”

A digital revolution Now researchers are turning to technology to help them study Parkinson’s in greater detail than ever before.

“One of the greatest challenges for me as a consultant and researcher is that I generally only see my patients for short windows every six to twelve months.
“Parkinson’s is a fluctuating condition, so how can I really know how it affects the individual throughout the day and between visits? And how can I really know how if the treatment I prescribe is right for that individual?
” Technology may provide the solution. Michele and her team in Oxford are now teaming up with UK researcher Max Little. Max has developed a new program that runs on a mobile phone and can monitor vital changes in tremor, balance, walking, and voice in just a few simple tests.
“We’re going to be asking some participants in the Discovery study to take one of our mobile phones home with them and complete the tests at different times over the course of a week. This will give us vital information about how their Parkinson’s affects them from day-to-day which we’ve never really had access to before.”
Dr Michele Hu

In the future these kinds of technologies may become part of the everyday management of Parkinson’s. Many people with diabetes monitor their blood glucose throughout the day by pricking their finger and putting a drop of blood on a testing strip. This can give them a much better idea of when they need to take their medication to manage their symptoms best. There is currently no simple test that does the same job for Parkinson’s, but researchers are working to develop smart wearable technologies that can monitor subtle changes in symptoms, and give people a signal to alert them to take their medication at the right time for them.

The future is personal

Today someone with Parkinson’s sees their consultant a few times a year and has their daily medication tweaked by a pill here, a pill there. But this is changing, and the internet is already transforming the way that we monitor and collect information about our health. Paul Wicks, vice president of innovation at PatientsLikeMe, a free online network that is open to people with any health condition, explains:

“Our ultimate ambition is to create a world in which personal experience drives the way conditions are measured and medical advances are made, and to empower patients to support one another by sharing their experience.
“We have 9,000 members with Parkinson’s from all over the world and have a relatively large group of young-onset patients who first experienced symptoms before the age of 40.
“We started PatientsLikeMe to help people better understand their illness, share information about their condition and treatment, and get the support they need to live better every day.
“Members report on the treatments they’re taking (including drugs, supplements, and exercise) share information about their quality of life, symptoms, and a whole range of insights into what it’s like to live with their condition.
“What members get in return are three things: through powerful graphs and reports they can see exactly how they’re doing day to day so they can make better care decisions, they can share information so that others can learn from their experience, and they contribute data for research so that medicine can improve for all.”
Paul Wicks

These advances in our understanding of Parkinson’s as a condition, our ability to monitor subtle changes, and the power of unprecedented amounts of data — mean personalised treatment for Parkinson’s could be just around the corner.

Note: This piece first appeared in Parkinson’s UK’s Progress magazine, issue 16 Winter 2015.