Myalink platform improves care for patients with myasthenia gravis

^{RareLink founders from left to right: Dr. Lea Gerischer, Dr. Sophie Lehnerer und Dr. Maike Stein© BIH | Dr. Sophie Lehnerer}

Myasthenia gravis is a rare neurological autoimmune disease characterized by fluctuating muscle weakness that worsens with activity. About 17,000 people in Germany suffer from the disease. Many struggle to access appropriate care, especially if they need complex immunotherapies. The start-up RareLink now aims to address this gap with its MyaLink platform, which leverages remote monitoring to enable personalized therapy management. The young company is a spin-off of the Berlin Institute of Health (BIH), Charité – Universitätsmedizin Berlin and the telemedicine provider Qurasoft. It has received support from Charité’s Neuroscience Clinical Research Center and the BIH Biomedical Innovation Academy, as well as the BIH Digital Health Accelerator and the NeuroCure SPARK-BIH program of Charité BIH Innovation (CBI). Ascenion, the commercialization partner of Charité and BIH, and CBI have guided RareLink through the spin-off process.

Patients with myasthenia gravis often lack access to experienced neurologists or specialized centers. They also frequently face significant travel distances or extended wait times for care, both of which are exhausting when muscle strength is already compromised. As a result, early detection of potentially life-threatening crises, such as those involving respiratory issues, is made more difficult. To address these challenges, a team led by Charité physicians Dr. Sophie Lehnerer, Dr. Maike Stein and Dr. Lea Gerischer has developed the MyaLink platform, enabling clinicians to monitor and assess disease progression remotely. With the app installed on their smartphones, patients can easily document symptoms via questionnaires and diaries. They can also collect data on their vital signs using so-called wearables, like an activity tracker that records heart rate and step counts or a digital spirometer that measures lung function. Plus, a medication plan and reminder feature help patients stay on top of their treatment regimens.

Physicians can use a web portal to review questionnaire responses and vital signs data or to update the medication plan. A chat function allows patients to contact their medical team quickly to discuss individual concerns. Based on the collected information, physicians can adjust the medication plan or provide personalized recommendations. This needs-based communication not only supports earlier detection of deterioration and reduction of immunosuppressive medication side effects, but also helps avoid prolonged hospital stays. The platform is certified as a medical device and complies with data protection regulations.

A feasibility study published in December 2024 has already shown that MyaLink can improve care for myasthenia gravis patients. The RareLink team now aims to extend the platform for use with other rare and chronic diseases.

“MyaLink allows patients to reach their physicians quickly and facilitates timely decisions, thus alleviating patient anxiety,” says Dr. Sophie Lehnerer, a neurologist at Charité’s Department of Neurology and Experimental Neurology. “Based on our experiences from the study and clinical practice, we already know there is enormous patient demand. By closely monitoring patients, we can ensure good therapeutic outcomes and save resources elsewhere. It was therefore important from the outset to involve patients in developing the platform.” In addition, the German Myasthenia Society, an organization that advocates for patients, provided advice and support to the study project from the very start, ensuring that the patient’s perspective was always taken into account.

MyaLink was also developed with support from Charité’s Neuroscience Clinical Research Center (NCRC), building on the clinical and scientific work of the Integrated Myasthenia Center (iMZ) at the university hospital’s Department of Neurology and Experimental Neurology. Since July 2022, Dr. Sophie Lehnerer has overseen the fundamental scientific and clinical aspects of the project, which was made possible through a fellowship of the BIH Biomedical Innovation Academy’s Digital Clinician Scientist Program. From 2020 to 2021, the BIH Digital Health Accelerator provided around €200,000 to support product development and spin-off preparation. The project additionally received funding from the NeuroCure/SPARK-BIH program, which guided the team through the execution of the clinical feasibility study, subsequent data analysis, and the integration of the MyaLink platform into Charité’s standard care pathways. Dr. Maike Stein was awarded the Walter Benjamin Fellowship by the German Research Foundation (DFG), enabling a postdoctoral stay at Harvard Medical School in Boston while also facilitating a collaborative research initiative between Charité and Harvard as part of the MyaLink project. In 2021, MyaLink received the Health-i Award presented by Handelsblatt and Techniker Krankenkasse, as well as the Patient & Stakeholder Engagement Award from the BIH QUEST Center for Responsible Research.

“MyaLink demonstrates how such collaborations can rapidly translate insights into real-life applications,” says Prof. Christopher Baum, Chair of the BIH Board of Directors and Chief Translational Research Officer of Charité. “We hope this new digital tool will enhance the quality of life for individuals with myasthenia gravis. It was very important to us to involve patients early on in the product development process.”

Source: Pressemitteilung des Berlin Institute of Health (BIH)

Contact:
Dr. Sophie Lehnerer
Klinik für Neurologie mit Experimenteller Neurologie (CCM) Charité – Universitätsmedizin Berlin
E-Mail: sophie.lehnerer@charite.de