The seventh meeting of the Steering Committee of the project ‘MY PD Journey’, in which Henk Bakkenrode represented Eurocarers, took place on 6th March 2017. Here are the main points discussed.
New Composite (Quality of Life) Scale
The PD Composite Quality of Life Scale is a clinical, rater-based scale for assessing the severity impact of motor and non-motor manifestations of PD. It was updated by Dr. Fabrizio Stocchi (Rome); its acceptability and hypothesis testing proved to be satisfactory. A new, second validation study will be published and presented in Brussels on 29th March in a policy meeting. Accomplishing this scale and getting it accepted in the medical world (MDS) is the first priority for the project in 2017.
European Inventory Study and its follow up
Many data on patients and their carers, their problems and experiences, were collected in the framework of the European Inventory.
Three studies are being developed, including one describing the interviews from a carer’s point of view, to be available in May 2017.
At the moment, still 7 coalitions are functioning on a national and individual basis, in Finland, Germany, Greece, Italy, the Netherlands, Spain and Sweden.
The budget for 2017 is less than 50% of the 2016 budget. The project’s team tries to get some funding via individual contacts with industries.
Next actions and program in 2017
Due to the budget restrictions, activities in 2017 will be limited to a workshop on 29th March, ongoing advocacy, publication and dissemination, validation and implementation of the Composite Scale, sharing of good practices, campaigning.
For more information on the project see: www.epda.eu, www.mypdjourney.com or contact firstname.lastname@example.org