The benefits associated with the SMA App are apparent from a variety of perspectives:
The SMA App can be found in the Apple Store or on Google Play by entering „spinal muscular atrophy“ or „APST“ in the search field.
Once you have found the App you will be able to download it completely free of charge..
Due to the individual and scientific nature of a regular self-rating tool, we provide the SMA App to you completely free of charge. The App is linked to the APST platform and, technically speaking, shares the same database..
Prior to using the App you will need to register with APST first and get a user account. Please visit www.ambulanzpartner.de to register.
The log-in information (user name and password) created for your APST user account on www.ambulanzpartner.de will be used for the App as well. Once you have logged in, you may complete the questionnaires, view your data and use the disease course diagramm.
The App can be found in the Apple Store or on Google Play .
You may install the App on your smartphone and enter your log-in information (user name and password) you created on the APST platform. The user name and password combination is identical for both the platform and the App. Deliberately, direct registration via the App is neither enabled nor envisaged. You may only perform this step via the APST platform.
SMA App Tutorial: General
SMA App Landing Page
When you open the App you will see the “Log-in” function. Deliberately, direct registration via the App is neither enabled nor envisaged. You may only perform this step via the APST platform. Click on the log-in field to proceed further in the App.
SMA App Log-in Page
To open the App, you must enter your user name and password combination and then activate the “sign-in” field. The user name and password combination is identical for both the platform and the App.
SMA App Home Page
You may access three features in the ALS App via this home page: perform “self-rating” (Functional Rating Scale), use the “disease course diagramm” or find answers to most frequently asked questions under “Learn More”
The Functional Rating Scale is a questionnaire designed to support people with SMA in the capturing and rating of their disease course
The Functional Rating Scale features 15 items with five sub-items each. The answers are given as scores ranging from 0 to 4. The total score can range from 60 and 0 score points, thus providing a disease status assessment and disease course rating (improvement, standstill, progress).
SMA App Tutorial: Funktional Rating Scale
Instructions for Use of the Functional Rating Scale
This App manual page introduces the scale and gives you instructions on how to perform your ratings correctly.
The Functional Rating Scale
15 items are arranged vertically for you to answer.
Summary of Ratings Submitted
You “click“ on the field that corresponds to the answer you want to give.
The App’s disease course diagram offers people with SMA the opportunity of appraising their own disease course as improved, stationary or progressive. It serves as a point of reference for patients affected by the disease as well as for doctors and therapists. The disease course diagramm compares the current Functional Rating Scale value with the FRS value of the first evaluation and gives a difference or progression value. This value serves the grading of the SMA disease course progression speed.
The link between the SMA App and the APST platform facilitates a graphical illustration of the disease course in the patient’s account. A flow chart in the App and the patient’s account visualizes the correlation between time curve and change in motor function.
SMA App Tutorial: The Disease Diagram
Setting Up the “Disease Diagram"
If the disease course calculator gives a progression value between greater than 0, one speaks of an improvement in the course of the disease compared to the first assessment. A progression value of 0 describes a standstill of the course of the disease and all values above 0 represent a progression of the disease compared to the first evaluation.
The SMA App may be used by adults with SMA that are already enrolled in the APST Register Study. For this purpose, acknowledgment of the Register Study Information, Data Privacy Declaration as well as signing of the Patient Information and Consent Form are mandatory. Patients already registered on the APST platform need not sign the form again.
.How Long Does It Take to Complete the Rating on the Functional Rating Scale Using the App?
The “interview“ via the SMA App takes about five to ten minutes.
What Is a Sensible Time Span for Use?
In principle, use of the SMA App makes sense over the entire course of the disease. At the advanced stages, only slight changes in the Functional Rating Scale might be observed. During treatment with Nusinersen (Spinraza) a standstill or an improvement (unchanged or improved score) may occur. Therefore, from a scientific point of view, continuation of the Functional Rating Scale is desirable even in this scenario, as unchanged or minimally varying values are equally of interest to researchers.
Provision of the App for smartphones (and other mobile devices) is an important step in the SMA self-rating scenario and in the promotion of patient autonomy in SMA. At that, each single capture of the Functional Rating Scale makes a small but concise and significant contribution to clinical research into SMA. Charité will cooperate with other centers for neuromuscular diseases in Germany and Europe on the scientific evaluation of the data entered into the SMA App. In addition, these data will be compared with research results from the USA. Data will furthermore be used for the evaluation of clinical studies conducted with study organizations or in cooperation with pharmaceutical or medical technology research companies.
How Can I Participate in the APST Register Study?
People with SMA currently receiving treatment at an outpatient department in Germany may participate in the register study. Most outpatient departments for neuromuscluar diseases are registered study sites for this register study and will be able to provide you with all the information and study documents you will need. For participation in the register study, acknowledgment of the Register Study Information, Data Privacy Declaration as well as signing of the Patient Information and Consent Form are mandatory. Following receipt of the signed Patient Information and Consent Form, APST will e-mail an “activation link” to the patient’s e-mail address. Once the patient has confirmed this “activation link”, the patient’s account will be opened on the APST platform. The patient will be invited to create a user name and password for their own user account. The user name and password combination is identical for both online access to the APST platform (“patient account”) and to open the App on your mobile device.
Marcel Gaudlitz
Tel. +49 (0)30-8103141 0
Mobil +40 170-5564502
support@ambulanzpartner.de
