Previous research on Parkinson’s disease has yielded many important results that can already improve life of people with Parkinson's disease.
However, in order to better tailor research projects to the needs of people with Parkinson's as well as their relatives and healthcare providers, it is helpful to know to what extent the research addresses such needs.
For this purpose, the Parkinson's Disease Society of the United Kingdom carried out a survey in 2014. They asked which research topics are important for people with Parkinson's, their relatives and health care providers. The following ten topics were selected by the people who completed the survey:
- Balance problems and falls
- Stress and anxiety
- Dyskinesia (unwanted movements that occur as a side effect of some medications)
- Different Parkinson syndromes and their treatments
- Dementia in people with Parkinson's
- Mild memory problems in people with Parkinson's
- Sleep Quality
- Monitoring the response of patients with Parkinson's disease to their treatment
- Fine motor skills (such as opening the buttons, operating the computer, telephone, remote control) and
- Problems with urination.
Afterwards, these topics were compared with international research projects. It was shown that such projects do not always focus on issues that people with Parkinson’s consider important.
Our team decided to carry out a similar survey in Luxembourg to make sure that research in the country works on topics that are in line with the demands of the people with Parkinson’s disease. The results of this anonymous survey will subsequently be published in the summer edition of the newsletter and will feed into the planning of future research projects.
You can fill this survey online in French or German. Thank you for your help!