CARE-NMD Project

The aim of the CARE-NMD project is to survey current patient care for DMD, and help to introduce care based on international consensus best practice. Through a pan-European network and international patient registry, the project hopes to improve care both within the partner countries and throughout Europe.

Led by Dr. Janbernd Kirschner at Freiburg University Medical Centre, CARE-NMD will distribute patient surveys to examine the practice of patient care in the partner countries, and according to the findings initiates improvements in the quality of care by means of specialised training for medical professionals.

In Hungary, the survey started on 9th September 2011. Hungarian patients and families registered in the TREAT-NMD database were sent the questionnaire, which can be filled out online via links provided in an email, or as a paper version. The survey will end on 14th of November.

The questionnaire should not take more than 45 minutes to complete. The data will be used for the CARE-NMD project and its scientific purposes only. This international survey has been approved by the responsible ethics committee.

If you are a Duchenne patient or family member living in Hungary and you think you want to improve the standards of Hungarian patient care you can participate in the survey. For participation please contact dr. Marta Garami via email garami.marta@oki.antsz.hu or by phone: 06 1 476 1362.