MyDystonia

Available on:



(click to download)

Supported languages:

Bokmål / Danish / English / Finnish / French / German / Italian / Norwegian / Russian / Spanish / Swedish

Cost:

Free

A disease diary for dystonia patients to track and record symptoms and treatment.

Approved by


Languages

Bokmål / Danish / English / Finnish / French / German / Italian / Norwegian / Russian / Spanish / Swedish

Countries of use

Any country where these languages are spoken.

Cost

Free

Developer

Dystonia-Europe (European Dystonia Federation)
(Based in Belgium)
https://dystonia-europe.org

Funder

Developer with support from Merz Pharmaceuticals

Medical Adviser

Dystonia-Europe (European Dystonia Federation)

Features

Support to deal with symptoms/disabilities Support to deal with symptoms/disabilities
Self-monitoring Self-monitoring
Trackers Trackers
Information Information

Summary

People with dystonia can use the app to help them to:

. Record and analyse the impact of the disease on their everyday lives
. Monitor their condition, treatment and treatment outcomes over time
. Look for trends in their symptoms, disease impact and treatment over the past months
. Set up, create and share PDF reports on their condition
. Discuss insights from the reports with their doctor and to inform decisions about treatment approach.

The app was developed:

. in consultation with hundreds of people with dystonia across Europe
. by Dystonia-Europe, the European umbrella organisation for national dystonia patient groups
. with support from Merz Pharmaceuticals.


Tags: Disability  ·  Health, Wellness & Care in the Community (HWCC)  ·  Medical

Reviews

Reviewer: European Patient Forum
Review: “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 specified
Weblink of reviewer: http://www.eu-patient.eu
Reviewer: Gill Ainsley, UK Ambassador for MyDystonia App Action for Dystonia, Diagnosis, Education and Research (ADDER) UK
Review: “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 specified
Weblink of reviewer: http://www.actionfordystonia.co.uk

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