CARE-NMD Patient Survey Update
11 Mar 2012
CARE-NMD survey has nearly 1100 responses
As the CARE-NMD Patient Survey draws to a close in the 7 Associated Partner countries*, we are very pleased to announce that thanks to the excellent response rate, it is the largest ever to have been conducted of DMD patients and their families.
1677 questionnaires were distributed, and with almost 1100 returned so far there is an overall response rate of 65%.
The data gathered will provide a crucial insight into the level of care available for DMD across seven European countries, and to the quality of life experienced by those living with DMD and their families. The data analysis stage of the project has now begun, and will continue for the remainder of the duration of the project.
To feed back the results to all those who took part, as this process continues and further results become available they will be published on the CARE-NMD website as well as via patient organisation meetings, newsletters and events in partner countries.
Furthermore, other countries - including Japan and Australia - are currently planning to use the CARE-NMD DMD Care Questionnaire (which forms the CARE-NMD Patient Survey along with the Quality of Life questionnaire) to quantify the availability of best-practice care in their own countries.
* Bulgaria, Czech Republic, Denmark, Germany, Hungary, Poland, and the UK.