Research priorities for improving life
Finding a cure will take time – so we also champion research to improve quality of life for people with Parkinson's and their families.
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 and their families to come up with a list of key priorities for improving everyday life in the shorter term.
What we did
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.
The top 10 priorities
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
Beyond the top 10
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?
Can you help?
How are we doing?
In 2016 we reviewed our progress in addressing the top 26 priority areas. So far we have:
- funded 8 research projects worth more than £6 million
- helped recruit participants to 31 research studies
- supported researchers to involve people affected by Parkinson's in 20 research studies