Results of the CARE-NMD project have been published in the Journal of Neuromuscular Diseases (see here).
CARE-NMD is a European Project improving care for Duchenne muscular dystrophy. CARE-NMD aims to improve patient quality of life and life expectancy, reducing health inequalities between and within countries.
The project brings together leading care centres to disseminate information about best-practice Duchenne care, and to implement international consensus care standards. The CARE-NMD Patient Survey across 7 partner countries, with almost 1100 responses, is the largest ever survey of care and quality of life for DMD.
CARE-NMD was part-funded by the European Union between May 2010 and April 2013. The work begun during this period is ongoing, with research publications expected in the coming months, and the Patient Survey due to be conducted in several additional countries. We would be delighted to hear from anyone using CARE-NMD resources, or who wishes to conduct the Patient Survey in their country. Please email the project co-ordinators for further information.
We are delighted to announce that the family guide for DMD, “The Diagnosis and Management of Duchenne Muscular Dystrophy” is now available as app for Android smartphones. The team from the Department of Medical Biometry and Medical Informatics, and the Department of Paediatric Neurology and Muscular Diseases in Freiburg lead by Jan Kirschner has developed the application which is available in English and German for Android smartphones.
You can download the application for free using the QR-Code provided or the by visiting the Android app store.
The application contains the same information that can be found in the DMD family guide, which is available on both the TREAT-NMD and CARE-NMD websites. In an ongoing study at the University Medical Center Freiburg the effectiveness of this application will be monitored. Further information about this study can be found here.
The app will be extended with additional interactive functions. Additional languages and a version for Apple iOS (iPhone) are also planned.
CARE-NMD International Conference
The CARE-NMD International Conference on Care in DMD took place on 17th-18th April 2013 in Budapest, with approximately 125 attendees from around the world including representatives of patient organisations, academic and clinical experts, and policymakers.
We are pleased to make available presentations from the conference where we have permission to do so. Please see the Conference page for further information.