MitrendS: Patient Controlled Data Powering MS-Research

MitrendS offers regular self-monitoring for multiple sclerosis patients at home and aims to empower patients by actively participating in disease management. Regular remote monitoring provides the opportunity to capture fluctuations of symptoms or disease progression and evaluate treatment responses based on personalized outcome measures.

Sclérose en plaques

Multiple Sclerosis (MS) is a chronic, progressive neurological disease affecting the brain and spinal cord. The nerve cells of the brain receive and send signals to body parts and organs. These impulses move along nerve fibers, which are isolated by myelin. In MS patients, the nerve isolation layer is erroneously attacked and degraded by the immune system. Thus, different disturbances and handicaps occur. In Switzerland, it is estimated that between 350 and 400 new MS cases occur every year. The exact mechanisms that contribute to this disease and the connection with other aspects of the disease are currently the subject of many studies.
MitrendS App

Notre projet

MitrendS in a nutshell

Smartphone- and tablet-based applications represent promising tools to evaluate the burden of disease and to monitor disability progression and treatment responses in patients with multiple sclerosis (pwMS).
In a collaborative research project, the MitrendS application for tablets is currently under development aiming to be a comprehensive tool to follow symptoms and neurologic impairment, including the motor function of the hand and arm, cognition, fatigue, mood, quality of life and gait. MitrendS offers regular self-monitoring for patients at home and aims at patient empowerment by actively participating in disease management. Regular remote monitoring provides the opportunity to capture fluctuations of symptoms or disease progression and evaluate treatment responses based on personalized outcome measures.

 

Exercices

Currently, three tests are implemented in MitrendS: The Line-Test, the Move-Dots-Test and a digital version of the Symbol-Digit-Modalities-Test (SDMT). In the Line-Test the subjects follow multiple curved lines in succession. Together with the Move-Dots-Test, where one uses thumb, index- and middle finger to rotate and move dots to a specific spot on the screen, the motor function of hand and arm are assessed. The digitalized SDMT can be performed by patients remotely. Several validated questionnaires, including the Fatigue Severity Scale and the Multiple Sclerosis Impact Scale, can be used to report patientbased outcomes on a regular basis directly from the app. Further tests are currently being developed to extend neurological assessments with the aim to offer a comprehensive test suite for pwMS.

Étude

MitrendS will be used in a prospective cohort study at the Department of Neuroimmunology and Multiple Sclerosis Research of the University Hospital Zurich. The app’s validity and psychometric properties will be investigated in pwMS and healthy volunteers (Citizen Science). The Citizen Science cohort will actively contribute to the collection of normative data.
Each participant is free to continue using the app after the trial period. In this way, longterm data can be collected, and the course of the disease monitored.


 
Données

Data is stored in the patient´s account on the MIDATA platform and thus remains entirely owned and controlled by the patient. The MIDATA cooperative is a completely independent platform and supports datadriven research through patient empowerment and citizen science approaches. The MIDATA platform provides a personal and secure environment to merge data collected by MitrendS with health-related data from hospitals and physicians to be used for outcome assessment and research. Patients decide to whom they allow access to their data. They can share their data pseudonymized to participate in appropriate studies or provide it to their treating physicians. In the case of MitrendS, participants receive evaluations of test performance directly via the MIDATA platform.

For further information about MIDATA and its structure visit www.midata.coop

Questions fréquemment posées

How is my data treated?

For this project, your personal data will be collected. Only very few professionals will see your unencrypted data. This is only done to perform tasks within the project. Your name will never be mentioned on the Internet or in any publication. Occasionally, there is a requirement in a journal for publication that individual data (socalled raw data) must be transmitted. If individual data must be transmitted, then the data is always pseudonymised and therefore cannot be traced back to you as a person. All persons who have access to your data within the scope of this project are bound to secrecy. The requirements of data protection are observed and you as a participating person have the right to inspect your data at any time.
This project may be reviewed by the responsible ethics committee or by the institution that initiated the project. The project leader may needs to disclose your personal information for such reviews. All persons must maintain absolute confidentiality. We comply with all data protection requirements and will not publish your name in any publication or on the Internet.

Do I get compensation?

You will not receive any compensation for participating in this study. You will receive an evaluation of your test results by e-mail at the end of the study.

What are my rights?

Your participation is on a voluntary basis. If you do not want to participate or later withdraw your participation, you do not have to justify this. All data collected up to the time of your withdrawal will be used anonymously in the evaluation. You may ask questions about participation and the project at any time. For further information, please contact:nims@usz.ch

How is this project financed?

The project is funded by the Clinical Research Program Multiple Sclerosis (KFSP MS), the Personalized Health and Related Technologies (PHRT) and the Swiss Data Science Center (SDSC).

Where can I contact you if I have any questions?

In case of any uncertainities or emergencies occurring during or after the project, you can always contact us on: nims@usz.ch

Partners

Partenaires du projet

The Bern University of Applied Sciences (BFH) offers an innovative didactic approach aimed at teaching, R&D and continuous training. The Institute for Medical Informatics (I4MI) is part of the BFH and the first Swiss institute in the field of medical informatics. By combining medicine and information technology, the I4MI focuses on patient-centered mobile and web applications.

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From its central location in Zurich, the USZ university hospital provides primary health care and cutting-edge medicine. Its services are available to everyone, every day of the year. The section Neuroimmunology and MS Research (nims) at the Department of Neurology, University Hospital Zurich, is home to one of the largest MS clinics in Switzerland.

The section’s areas of special interest are to carry out clinical, translational and fundamental research within the field of neuroimmunology and MS.

nims-zh.ch

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Freedom and individual responsibility, entrepreneurial spirit and open-mindedness: ETH Zurich stands on a bedrock of true Swiss values. The university for science and technology dates back to the year 1855, when the founders of modern-day Switzerland created it as a centre of innovation and knowledge.

At ETH Zurich, students discover an ideal environment for independent thinking, researchers a climate which inspires top performance. Situated in the heart of Europe, yet forging connections all over the world, ETH Zurich is pioneering effective solutions to the global challenges of today and tomorrow.

ethz.ch

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The MIDATA data platform enables members of the public to compile their health records in a secure personal account free of charge and to determine if and how they are used in research projects. In this way, they can act as «citizen scientists», making an active contribution to medical research.

MIDATA serves as a data repository for its members and other participating members of the public. It is a non-profit cooperative facility that operates without offering financial incentives, similarly to blood donation services, for instance. The account holders are not paid for their intentional and voluntary «data donation». The revenue generated from the integration of their data into a scientific study is reinvested in the services offered on the platform and in a variety of smaller research projects. Start-ups, IT service providers and research groups can use the platform to offer mobile apps, such as health apps or apps for treating and monitoring patients with chronic illnesses.

MIDATA is currently being used in a number of scientific health projects. In one particular project being conducted at University Hospital Zurich, for example, patients suffering from pollen allergy are being included in a study. More and more projects are being run that are directed at a wide section of the population and are value to many – as is the case with the «MitrendS» project.

www.midata.coop
Become a member

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COGITO is a Center for Applied Neurocognition and Neuropsychological Research. By bringing the ability to think to the foreground, they create a combination of research, diagnostics and therapy.

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PHRT is a program to achieve the goals stated by the ETH Board in the field of personalized medicine / health. It intends to offer technological know-how, expertise and capacity from the ETH domain institutions to medical and clinical partners by supporting collaborative interdisciplinary research projects.

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SDSC – Swiss Data Science Center – accompanies the academic community and the industrial sector in their data science journey, applying AI and ML and facilitating the multidisciplinary exchange of data and knowledge.

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