New MG app helps doctors track symptoms between clinic visits

Study shows wide day-to-day symptom changes missed in routine care

Written by Steve Bryson, PhD |

An illustration of a man looking at his smartphone.

A new digital platform — MyaLink — enables doctors to monitor the physical and mental health of people with myasthenia gravis (MG) in real time and communicate directly with patients through the app, a study shows.

Data collected by MyaLink on MG patients’ symptoms, disease activity, daily functioning, and quality of life captured wide day-to-day symptom variation. The system also helped doctors make treatment adjustments and provide guidance remotely as symptoms changed.

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Real-time symptom tracking could support MG care between visits

Researchers say this kind of real-time monitoring could reshape how chronic, hard-to-manage diseases like MG are followed and supported beyond traditional clinic visits.

“These unprecedented real-time insights that are typically missed in standard care settings could complement and enhance current MG care,” the researchers wrote.

The study, “Remote Monitoring in Myasthenia Gravis: Exploring Symptom Variability,” was published in the Annals of Clinical and Translational Neurology.

MG is a rare condition in which the immune system disrupts the communication between nerves and muscles. This causes muscles to become weak, especially with activity. In some cases, the muscles that control breathing become too weak, leading to a serious and even life-threatening myasthenic crisis, requiring emergency care and breathing support.

Because MG is chronic, most patients need ongoing, often lifelong care from specialists. Still, “access to MG specialists is often limited due to geographical constraints, and complicated as patients have to navigate between multiple healthcare professionals,” the researchers wrote.

As a result, details about symptoms can be missed between appointments, potentially leading to treatment delays, hospitalizations, and worse outcomes.

New digital health tools offer a promising solution. Using smartphones and wearable devices, patients’ symptoms and health data can be monitored from home and shared with doctors. While such technologies may help improve safety, reduce hospital visits, and support better daily management of diseases, they have “been largely underexplored in MG,” the researchers wrote.

MyaLink platform built specifically for myasthenia gravis monitoring

Researchers in Germany developed MyaLink, a digital monitoring platform specifically for MG that includes a secure online portal for doctors and a mobile app for patients.

What makes MyaLink different is that doctors don’t just receive the data — they can see it in real time and communicate directly with patients through the app. This means doctors can make earlier treatment adjustments and provide care remotely, instead of collecting data and reviewing it later.

To examine whether MyaLink data can reveal changes in symptoms between clinic visits, the team launched a clinical trial (DRKS00029907). The study enrolled 45 MG patients with a median age of 48 years, most of whom were women (73.3%).

Participants were randomly assigned to use or not use MyaLink in addition to receiving standard care. Those assigned to MyaLink received a wearable wristband to track activity and a digital device to measure lung function (spirometer).

Our study provides promising evidence for the potential of remote monitoring and telemedical treatment provided by solutions such as MyaLink to capture the [variable] course of the disease.

Patients visited the clinic before and after the study, during which doctors collected clinical data and assessed muscle strength (Quantitative Myasthenia Gravis Score) and disease severity (MGFA clinical classification). Some patients also had extra in-person muscle strength assessments.

Through the app, patients provided regular reports on several measures, including the MG Activities of Daily Living scale for MG’s impact on daily functioning and the MG Quality of Life-15 questionnaire for quality of life.

Doctors used MyaLink data to guide care and check in with patients

Doctors reviewed the data and contacted patients as needed during virtual check-ins at one and two months.

At the end of the 12-week follow-up, there were no significant differences between the groups on any MG outcome measures. Most participants in the MyaLink and control groups remained stable (86.2% vs. 73.3%), while few participants worsened (13.8% vs. 13.3%) or improved (0% vs. 13.3%).

However, individual disease severity reports varied widely over time in both the MyaLink and control groups, particularly quality-of-life measures. Activity tracking and spirometer use also fluctuated within the MyaLink group.

“MyaLink is a powerful tool for capturing the highly [variable] disease course,” the team wrote.

About half of the participants in both groups experienced a sudden worsening of symptoms (exacerbations) and/or MG-related hospitalizations. People using MyaLink were less likely to experience exacerbations (45% vs. 53%), but more likely to be hospitalized due to MG (17.2% vs. 6.7%).

Within the MyaLink group, patients who had MG-related hospitalizations or exacerbations (H&E subgroup) showed greater variation in clinical scores for daily functioning, quality of life, and muscle strength than those without. The most pronounced difference was in daily functioning.

More severe MG episodes linked to greater symptom variability

The H&E subgroup also sent more messages through MyaLink’s chat feature overall and had their corticosteroid doses adjusted by their doctor, while no dose adjustments were reported among those without hospitalizations or exacerbations.

Most patients (93.3%) in the H&E subgroup also received at least one doctor-initiated message after their data were reviewed during scheduled remote check-ups, compared with 60% of patients in the other subgroup.

Among MyaLink users, 66.7% experienced a noticeable worsening in daily functioning scores at least once between two consecutive assessments. Of these, 55% contacted their doctor through the app around the time their symptoms worsened to discuss symptom changes and treatment options.

“Our study provides promising evidence for the potential of remote monitoring and telemedical treatment provided by solutions such as MyaLink to capture the [variable] course of the disease,” the scientists wrote. “More extensive research is needed to understand the impact of telemedical care on long-term clinical outcomes and to optimize its integration into routine clinical practice.”

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