Federacion Espanola de Parkinson – Training programme for engagement in research for people living with Parkinson’s disease

Parkinson’s disease (PD) it is a neurodegenerative and chronic disease that affects more than 1 million people all across Europe (EPDA, 2011), and around 160.000 in Spain.

According to the European Parkinson’s Disease Association (EPDA, 2012), 42% of people with PD need additional support to learn about ongoing research carried out in Parkinson’s, more than a quarter (26,4%) would be interested in participating in clinical trials and 28,5% wanted to participate in research studies.

Therefore, we will develop a Training programme to improve the capabilities of people living with PD to participate in research studies, like clinical trials, social or technological research studies. The project will have three activities:

(1) Visual informative toolkit addressing complex information about research in an accessible and simple way, using an everyday language;
(2) On-line training module on how to participate in research opportunities through our online training platform ‘Aula Parkinson’ (http://aula.esparkinson.es/);
(3) Face-to-face workshop on Best practices in patient engagement in research, together with the PD community, researchers, social actors and representatives of the industry.

This initiative will be part of our broader project called ‘Observatorio Parkinson (www.observatorioparkinson.com)’, intended to support research on PD in Spain.