European Patient ForumReview:
“Dystonia Europe developed the MyDystonia app for patients. MyDystonia is an electronic diary created for people with the neurological disease Dystonia. By answering predefined questions (e.g. symptoms like overactive muscles or pain and impact on daily living) the user is able to examine and to visualise his/her well-being according to the treatment schedule.
MyDystonia gives the physician a reliable overview ahead of the consultation, helping to save time. It also helps the patient keep track of their symptoms and how effective their treatment is. This has led to improved communication and treatment outcomes.
The App was initiated, designed and developed by patients for patients. Dystonia Europe has the 100% ownership of the project, the database includes collected data from users of the MyDystonia diary.”Source:
European Patient Forum, Position paper on eHealth, Dec 2016, page 12, http://www.eu-patient.eu/whatwedo/Policy/eHealth/Usage:
Not specifiedWeblink of reviewer: http://www.eu-patient.eu
Gill Ainsley, UK Ambassador for MyDystonia App Action for Dystonia, Diagnosis, Education and Research (ADDER) UKReview:
“The app is an electronic diary you can use to record your symptoms daily, weekly or monthly as you wish. There are several questions related to your physical symptoms, your emotional wellbeing and your quality of life.
The app will remind you to enter your data each day but if that is too often for you then you can choose how often you wish to complete the questionnaire.
You can then use this data to create graphs showing at a glance just how your dystonia symptoms have changed or remained the same over your treatment period.
I have shown this to my dystonia consultant and he was very interested as I am sure most if not all dystonia consultants will be. They can use the graphs to decide if your treatment has been successful or not and therefore whether something needs to be changed or not.
The data will then be collected centrally and used for various research projects. All data will be anonymous, the only person/people who will know which data is yours is you and whoever you choose to show it to e.g. your consultant.”Source: http://actionfordystonia.co.uk/wp/Usage:
Not specifiedWeblink of reviewer: http://www.actionfordystonia.co.uk