MyaLink: Clinical effects on disease severity and quality of life of myasthenia gravis patients based on telemedicine treatment with point-of-care diagnostics in the iMZ

Study Description:

Myasthenia gravis (MG) is a neurological disease in which transmission between nerves and muscles is blocked. Generalized muscle weakness, even involving the respiratory muscles, can lead to life-threatening crises requiring hospital treatment. Due to the disease's rarity and complexity, affected individuals depend on specialized medical advice and therapy. However, long waiting times for appointments at specialized centers mean that much information about the course of the disease is lost, and necessary treatments (often) begin too late. Many apps for monitoring neurological disorders have been developed to close this gap in care in recent years. Sharing such platforms between patients and their caregivers reduces the burden of disease, improves the quality of life and care for MG patients, and avoids hospitalizations.

In the MyaLink study, patients regularly record their symptoms via so-called PROMS ("Patient-reported Outcome Measures") and vital signs (e.g., lung function) from home. In addition, patients receive individual consultations with their specialists. The aim is to investigate whether the shared use of this digital platform impacts the quality of life and disease severity and whether hospitalizations can be avoided.

Small, networked devices, some worn on the body and measured bodily functions (so-called wearables), are used for measurements at home. These wearables are connected to the patient app "MyaLink," which allows health data to be shared with the practitioner. Through a web-based platform, the specialist can make therapy adjustments remotely. The development was done in collaboration with software partner Qurasoft GmbH.

The MyaLink pilot study will investigate two groups with 15 MG patients each (intervention group; control group). The intervention period will be three months, including initial and final examinations. In addition, telemedical visits will take place with the treating physician for the patients in the intervention group.

Further information can be found at www.myalink.de

Contactcontact-myalink@charite.de

Principle Investigator:
Prof. Dr. Andreas Meisel (Charité, Klinik für Neurologie mit Experimenteller Neurologie und Integriertes Myasthenie Zentrum (iMZ))

Study Coordination:
Dr. med. Maike Stein 

Projekt Management:
Dr. med. Sophie Lehnerer + Dr. med. Maike Stein

Registration:
The study is registered in DRKS (DRKS00029907) Bitte Nummer verlinken wie auf der deutschen Seite

Course of the study:
11/22 – 01/23 (3 months)

Projekt partners:
Qurasoft GmbH

Funding:
Argenx, UCB, Hormosan