MitrendS: Patient-controlled data powering research on MS

MitrendS is intended to enable more precise symptom control for MS patients. The aim of this project is to develop new methods for recording important symptoms of the disease. The regular performance of exercises both at the hospital and at home offers the possibility of recording fluctuations in the course of the disease. In the future, better control of therapy effectiveness will be achieved on the basis of individual measurement results.

About Multiple Sclerosis

Multiple sclerosis (MS) is a chronic disease of the central nervous system. The protective and insulating cells of the nerves of the brain and spinal cord are attached and destroyed by the body’s own immune system. This results in an individual constellation of symptoms for each patient. Many studies are currently focusing on the exact mechanisms contributing to this disease process and the correlations with other aspects of the disease. Although new drugs are able to stop the progression of the disease to a large extent, the body’s immune system is slowed down. A cure for MS does not yet exist. In addition to the development of targeted drugs, the development of new measuring methods for the more accurate recording of individual symptoms is also important.
MitrendS App

Our Project

MitrendS in a nutshell

Smartphone- and tablet-based applications represent promising tools for establishing new possibilities to monitor the progress of chronic diseases. MitrendS is an application developed by physicians and IT specialists to specifically examine certain neurological symptoms, such as hand functions. By using the application, patients are given the opportunity to actively document the course of their disease and to emphasize individual problems.

 

Exercises

Currently, three exercises are implemented in MitrendS: The Lines exercise, the Points exercise and the Symbols exercise. In the Lines exercise, curved lines must be drawn one after the other with a pencil and both index fingers. In the Points exercise, three blue points are moved in three circles with thumb, index finger and middle finger. Both exercises serve to evaluate the motor function of hand and arm. All exercises can be performed by the patients at home. In addition, several questionnaires which have already been validated are stored in the app. Further exercises are currently being developed to expand the neurological examinations.

 

About the study

MitrendS is used in a study in the Department of Neuroimmunology and MS Research (nims) of the University Hospital Zurich. By participating in the Citizen Science project, healthy people can help to collect comparative data. In order to investigate comparative parameters and learning effects, a participation period of two weeks is required. Participants are free to continue using the app after the trial period. At the end of the study, each participant receives an evaluation of their hand function exercises in comparison to other participants.


 
Data

The data is stored on the corresponding user account of the MIDATA platform. Thus, the data remains completely in the possession and under the control of the user. The MIDATA cooperative is a completely independent platform and supports data-driven research through patient empowerment and “Citizen Science” approaches. The MIDATA platform provides a personal and secure environment to merge the data collected by MitrendS with health-related data from hospitals and physicians. This data is used for results evaluation and research. The user decides to whom the access to the data is granted. They can share their data anonymously in order to participate in appropriate studies or make it available to their attending physicians. In the case of MitrendS, the participants receive evaluations of the exercise performance directly via the MIDATA platform.

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

Frequently Asked Questions

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 (so-called raw data) must be transmitted. If individual data must be transmitted, then the data is always anonymised 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 participant 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 might have 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 exercise 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).

How can I get in touch with you?

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

Partners

Project Partners

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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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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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
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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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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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