Priorities set by people with Parkinson's
Alongside our groundbreaking research to develop better treatments and a cure, we also support research to improve quality of life.
To help us focus on what matters most, we worked with people affected by Parkinson's, their families and professionals to come up with a list of key priorities for improving everyday life in the shorter term.
We worked with the James Lind Alliance and researchers at UK universities to carry out a Priority Setting Partnership.
Well over 1000 people affected by Parkinson's, carers and health and social care professionals took part.
The findings were published open access in the British Medical Journal.
These priority areas will help direct research efforts in improving everyday life with Parkinson’s.
1. Balance and falls
2. Stress and anxiety
3. Uncontrollable movements
4. Personalised treatments
6. Mild thinking and memory problems
7. Monitoring symptoms
10. Urinary problems
Because Parkinson's is such a complex and variable condition we are also keen to support and encourage research that addresses important issues that did not make the top 10, including:
11. What treatments would ensure the medications were equally effective each day (prevented or managed wearing off, variability, on or off states) in people with Parkinson’s?
12. What drug treatments are best for the different stages of Parkinson’s?
13. What interventions are effective for reducing or managing unexplained fatigue in people with Parkinson’s?
14. Would the monitoring of dopamine levels in the body (eg with blood tests) be helpful in determining medication timing and amount (dose)?
15. What is the best treatment for stiffness (rigidity) in people with Parkinson’s?
16. What is the best type and dose of exercise (physiotherapy) for improving muscle strength flexibility, fitness, balance and function in people with Parkinson’s?
17. What best helps prevent or reduce freezing (of gait and in general) in people with Parkinson’s?
18. At which stage of Parkinson’s is deep brain stimulation (a surgical treatment that involves implanting a ‘brain pacemaker’ that sends signals to specific parts of the brain) most helpful?
19. What treatments are helpful in reducing bowel problems (constipation or incontinence) in people with Parkinson’s?
20. What treatments are effective in reducing hallucinations (including vivid dreams) in people with Parkinson’s?
21. What training to improve knowledge and skills do informal carers (family and friends) need in order to best care for people with Parkinson’s?
22. Can medications be developed to allow fewer doses per day for people with Parkinson’s (for example combinations of medications in one pill, slow release pills)?
23. What is the best treatment for pain in people with Parkinson’s?
24. What treatments are helpful for swallowing problems (dysphagia) in people with Parkinson’s?
25. What training, techniques or aids are needed for hospital staff, to make sure patients with Parkinson’s get their medications correctly and on time?
26. What treatments are helpful in reducing tremor in people with Parkinson’s?
Explore research to improve life
More ways research is improving life
Many people with Parkinson's experience urinary problems, particularly poor bladder control. We investigate the latest research into managing this symptom - why and how it affects people with the condition, and the progress being made to find treatments that can help.
Read our blog: Bladder problems in Parkinson’s: ask the expert
Intense muscle spasms called dystonia are a common feature of Parkinson’s. In this blog we explore the research into this important and painful symptom.
Read our blog: Dystonia and Parkinson’s: ask the expert
We look at a symptom of Parkinson’s that can be stressful, frustrating and lead to falls. How are researchers working to develop coping strategies for freezing of gait?
Read our blog: Freezing in Parkinson’s — and how to thaw.
The symptoms of dementia can include problems with memory, concentration and planning. In this blog we explore the relationship between dementia and Parkinson’s, and how research is looking to help.
Read our blog: Dementia and Parkinson's: ask the expert.
Many people with Parkinson's experience pain. We investigate the latest research into pain - why and how it affects people with the condition, and the progress being made to find treatments that can help.
Read our blog: Can we take the pain out of Parkinson's.
Parkinson’s is probably not simply one condition, but instead an umbrella term for many different types of condition. Researchers are making strides towards understanding how and why people with Parkinson’s differ, so that we will be able to choose the right treatments for the right people.
Read our blog: Parkinson’s. It’s time to get personal