The search for completely therapeutic possibilities for the treatment of NF2 was the reason for a meeting of the Morrison working group at the Leibniz Institute Jena (Helen Morrison, Lars-Björn Riecken, Michael Reuter), the board of the research department of the Werner Wicker Clinics Bad Wildungen (Georg Brunner, Thomas Meiners), the head of the NF Centre at Helios Klinikum Erfurt (Steffen Rosahl) and potential sponsors with the head of the oncology research branch of the company Curevac (Ulrike Gnad-Vogt) at the Frankfurt “Squaire” on 22. Of course we cannot publish confidential details of the talks, but the scientific, interdisciplinary exchange revealed very important approaches for the commitment of the Merlin Foundation outside the confidentiality agreement.
The starting point was the idea of using the new mRNA technology advanced in vaccine production to treat cancer. If body cells can be programmed to produce the spike protein of the SARS-COV2 virus, can’t the production of Merlin, the protein missing in NF2, also be revived in the body cells by mRNA supplied from outside via liposomes?
Unfortunately, the “devil is in the detail” here too: even if this were possible, it is hardly possible to control the amount of merlin produced. Too much merlin, in turn, could have catastrophic consequences in the body.
It could work better if the immune system were “raised” against the tumour cells (e.g. in schwannomas, meningiomas and ependymomas), again very similar to the vaccination against Covid.
But to do this, one first needed a clear target for this “immune storm”, so the antibodies and immune cells would have to know which cells to fight against. To do this, researchers need to find external characteristics or “markers” on the diseased cells or “insert” such markers into the tumour cells.
In order to create something like this, it needs precisely this close cooperation between clinic and research, for example, to supply human tumour cells that can be examined in the laboratory using the latest analytical methods (tumour bank). From a database (registry; Anna McLean, Helios Erfurt), in which much other information is stored, such as the growth rate of the removed tumour, individual profiles can then also be created or tumour groups with the same characteristics can be researched.
In addition, NF2 mouse models could be “planted” with human tumours (humanised animal model). Different substances could be tested on them to stop tumour growth and promote regeneration of the nerves.
Since changes (genetics, proteome, metabolism) such as those that occur in NF2 tumours also play a role in many other human tumours, the benefits of this research are probably not limited to neurofibromatosis. This in turn opens doors in the pharmaceutical industry and politics….
Tumour bank and registry are therefore currently the most important tools in the fight against the disease. The MERLIN FOUNDATION will support both. The priority here is to create a position for a clinical coordinator, who will support the development of the databases, but at the same time promote contact between the participating working groups. In addition, doctoral students will find a scientific home in this project.
This project has a Thuringian nucleus, but will be rolled out with other working groups in Hamburg, Tübingen, Berlin and Würzburg, initially throughout Germany and later hopefully throughout Europe.
To this end, another link is being activated that seeks the same goals in the field of NF2 therapy to a cure: the European branch of the US-based Childrens Tumour Foundation. A meeting with the European representative of this strong funding association will already take place within the next 3 months. The aim will be to create synergies and establish a European research alliance.
A special issue of the journal Life (https://www.mdpi.com/journal/life) with the provocative, forward-looking title “Neurofibromatosis: Prevention – Alleviation – Cure” (Editor: Steffen Rosahl) is also in preparation.
In the context of another multicentre project, the psychology faculty of the University of Giessen (Anna Freier, Johannes Kruse; https://www.ukgm.de/ugm_2/deu/ugi_pso/index.html) succeeded in uncovering essential psychological factors in coping with the disease (e.g. individual resilience) and their correlation to disease severity in NF2. These results are currently being processed for publication in scientific journals, but they have already signalled to us that treatment providers need to invest much more in this area if they want to improve patients’ quality of life.
Finally, there is the Erfurt “baby”: the study of the influence of nutrition and physical activity on the growth behaviour of tumours, on neuronal regeneration and on quality of life. Vanessa Stork from the University of Erfurt has laid some foundations here as part of her master’s thesis on the health behaviour and use of smartphones, the internet and health apps of NF2 patients. If it is possible to identify food components that promote or inhibit tumour growth, it might be possible to bypass side-effect toxic drugs and promote public health in this area in a natural way (public health issue).
In order to make the current diagnostic and therapeutic efforts in the clinics more efficient and to improve the Germany-wide cooperation with physicians in private practice, we have communicated with the boards of the German Hospital Association (DKG) and the Joint Federal Committee (gBV) in recent months and prepared an elaborate application for the inclusion of NF2 in the list of diseases approved for outpatient specialised medical care (ASV) (Denise Löschner, Helios Erfurt). This application has been before the gBA for a month.
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