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Welcome to the BRAINTEASER Newsletter!

Dear Reader,

This is our first release of the BRAINTEASER Newsletter, a running project funded by the European Commission under the Horizon 2020 programme, the EU Framework Programme for Research and Innovation. BRAINTEASER lasts 48 months and involves 11 partners working together to bring the advantages of artificial intelligence directly to the patients affected by Multiple Sclerosis and Amyotrophic Lateral Sclerosis.

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BRAINTEASER is a data science project that seeks to exploit the value of big data, including those related to health, lifestyle habits, and environment, to support patients with amyotrophic lateral sclerosis and multiple sclerosis and their clinicians. Taking advantage of cost-efficient sensors and apps, BRAINTEASER will integrate large, clinical datasets that host both patient-generated and environmental data.
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The voice of our clinicians: the use of technologies in the treatment and management of MS and ALS

Prof. Mamede de Carvalho, Instituto De Medicina Molecular João Lobo Antunes (PT) - Unit Leader, MCarvalho Unit and Prof. Roberto Bergamaschi, IRCCS Mondino Foundation Pavia (IT), Director of the Multiple Sclerosis Research Centre.
Two of the project’s clinicians, Mamede de Carvalho for Amyotrophic Lateral Sclerosis (ALS) and Roberto Bergamaschi for Multiple Sclerosis (MS), have been interviewed to have their vision on the use of digital tools for the treatment and management of MS and ALS patients and to know more about their previous experiences in using technologies in clinical practice.
> Do you have experience in using mobile apps. (like Cleo, Emilyn, Lumosity, BelongMS...) or other digital/software tools for remote tracking/monitoring the patients and management/treatment of ALS ?
Mamede: No. We do not have experience in using apps for monitoring patients and supporting clinical decisions.  Indeed, this step would require permission by the National Drug Agency (INFARMED), which has the legal role of approving apps and devices for clinical use. Certainly, we have approached this issue in exploratory studies in the past but not yet in an implementation phase.
Roberto: We don’t have a particularly extensive experience on MS-applied devices/tools. Moreover, the few that we have experienced were either too coarse or difficult for the patient to use. Precisely for this reason, the development of agile and reliable devices within the BRAINTEASER project would be desirable.

What crucial features do you think the existing apps and tools are missing that would eventually lead to wider adoption in practice ? 
Mamede: Apps and devices should be appropriate for routine use (feasibility), for example low cost, simple for most patients (user-friendly) and well-tolerated. Moreover, they should be easy to find and replace in case of damage (availability). Finally, apps and devices should provide results that are clinically relevant, providing information determining different clinical actions to improve patient's condition.
Roberto: The few app/devices that we had the opportunity to test did not include measures sensitive and specific enough to guarantee a complete assessment of the patients' situations. Moreover, some of them were designed in such a way that the presence of daily reminders for patients to perform specific activities were interfering too much with their daily life, and as such they were more detrimental than useful.

Do you have experience in using wearable sensing devices (wristbands, smartwatches...) in remote patient monitoring and tracking ALS disease progression and vital parameters? 
Mamede: Yes. ALS patients on respiratory care or requiring respiratory evaluation, frequently use at their home specific sensors to monitor ventilatory function, in particular oximetry and, sometimes, capnography to measure blood CO2 saturation. This data is transmitted to their medical doctors dealing with respiratory problems. However, this information is unidirectional and it measures only one vital parameter.
Roberto: No, we don’t. We actually believe that the use of wearable sensing devices is of potential great interest as it allows the clinicians a longitudinal monitoring of multidimensional variables in a continuous way, while minimising the risk of data loss. They are simply not integrated in the clinical practice yet, but we think that they will represent a valid tool that, integrated with the existing more traditional approaches, will improve clinical care and patients’ quality of life.
“We will contribute to assess the disease progression and advance the medical intervention to prevent the decline, empower and maintain ALS and MS patients healthier”

 Prof. Maria Fernanda Cabrera 
Coordinator of the BRAINTEASER project and Innovation Director of the LifeSTech research group, Universidad Politécnica de Madrid


On June 3rd took place the first open co-design workshop of BRAINTEASER to present and discuss the digital tools that the consortium is in process of design and development. The workshop also was supported by experts from different disciplines who helped to analize several aspects of the tools for MS and ALS.

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BRAINTEASER first Environmental Sensors Workshop
The Environmental Sensors workshop - organised by both technical and clinical BRAINTEASER' partners -  was aimed at discussing some crucial aspects... 

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Brainteaser online Workshop: Patients and Clinical Needs for MS and ALS 
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BRAINTEASER is a pan-European project and brings together a highly skilled and complementary consortium of eleven organisations. The multidisciplinary gender-balanced consortium from academia, industry, clinical settings and the non-profit sector come from six European countries.
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