Vigdis Thompson Foundation – Research activities and their implementation on the subject of leptomeningopathy

Since 2019, the HEAD-Genuit Foundation has been financially supporting the Vigdis Thompson Foundation in researching and treating leptomeningopathy, rare and often misdiagnosed spinal diseases: Arachnoiditis, a chronic inflammation of the soft spinal meninges in the lower region of the spine, and Tarlov cysts as a possible manifestation of the disease. The aim of the funded research is to find characteristics, markers, and triggers of these little-known clinical pictures. The scientific findings are to be globally disseminated – both among those affected and in medical circles – to increase awareness of this disease, to inform about medical care, and to advise those affected. Through targeted continuing education opportunities, more inpatient treatment options should ultimately be created.

As a basis for scientific work, the Vigdis Thompson Foundation has developed and established a digital patient register that records all data from patients worldwide, in addition to a website offering and the setup of a digital workflow for processing inquiries. For this purpose, the position of a study nurse was created in 2019, who since then has been collecting, documenting, and preparing study-relevant data in close exchange with those affected for scientific analyses. She also acts as a mediator between patients and treating physicians. Surgical treatments are performed at VTF’s medical partner, the Heinrich-Braun-Klinikum Zwickau.

Achievements / Milestones 2019 – 2024:

• Development and maintenance of the digital patient register with approx. 1,512 registered patients
• Restructuring and optimization of the bilingual web presentation
• Public relations
• Patient-related consultation for physicians
• 388 Surgical treatments
• Several scientific publications

Goals 2025 – 2029:

In recent years, the VTF has not only been able to analyze the data from the patient register but also develop concrete treatment recommendations based on the clinical information obtained. Currently, there is a lack of reliable data on quality of life, which is a central parameter in the evaluation of surgical therapies. Therefore, the goal for the coming years is the integration of a longitudinal Quality-of-Life Assessment (QoL) into the patient register.

The histological and immunohistochemical analysis of biopsy samples from patients with leptomeningopathy/arachnoiditis has shown that an acute inflammation is not detectable in all cases. It appears that inflammation marks the beginning of a pathophysiological process that ultimately leads to a degeneration of the arachnoid membrane. The goal of future research is to investigate this degenerative transformation of the arachnoid membrane at the molecular level. Mechanisms that explain the transition from an acute inflammation to a chronic-degenerative connective tissue disease will also be researched.

Cold atmospheric plasma has proven promising in the treatment of inflammatory processes in recent years. This successful research model is now to be extended to arachnoiditis. The aim is to investigate the influence of cold plasma on inflammatory and degenerative processes of the arachnoid membrane. This innovative research could open up new therapeutic approaches for the treatment of arachnoiditis and related diseases.