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2024-04-05-accounts

Introduction

The Trigeminal Neurology Institute (TNI) is still in the early stages of development and therefore this Annual Return will reflect key activities that have taken place and will also show where possible the progress of projects which the charity has instigated using external bodies.

In view of the complexity of TNI’s mission, it has been important to utilise the knowledge and experience of individuals and businesses that can be relied upon to deliver products and services to support and sustain TNI. Consequently, the trustees have sought/are seeking help with IT and AI, a strategic communicator, a grant fundraiser, and a health economist.

The function of the charity is research-based as opposed to being patient support focussed. The long-term aim being to provide patients with a high-quality advisory service through a patient registry. Initially by running research programmes to establish where patients are, how they are treated and what needs to be improved. The end result will be to ensure that all patients who are assessed in this way are seen at NHS Centres of Excellence throughout the UK where it has been established that they will receive the best TN treatment available.

Trustees

Joanna Zakrzewska (President and founder) Simon Tate (Chair of the Board and founder) Ann Hayes (Member of the board and founder)

Secretary

Adrian Hale

Patient Data

LifeArc ( a self-funded medical research charity) has worked collaboratively with TNI in a joint project to review CPRD (Clinical Practice Research Datalink) records. The first part of this analysis is well underway, and the joint team has started reviewing CPRD data. This is a complex analysis and will require multiple iterations, to best understand the demographics and patient journeys for TN sufferers.

Similarly, UCL (University College London) has obtained patient data as a result of the need to know the effects of Covid on people currently affected by various diseases. As a consequence, UCL is now working through a database of some 57,000,000 records to provide that information and the TNI can work with the information and UCL as this data emerges for publication.

When these two databases are to hand, it is TNI’s intention to make a comparison between them to establish the true epidemiology of TN that can then be addressed by providing the necessary research, diagnostic service and education of Healthcare Professionals.

Diagnostic tool

We are in the process of developing a screening tool for use in general dental practise and general practise to diagnose possible cases of trigeminal neuralgia.

Financial Report

All of the research performed to date has been funded by LifeArc directly, with TNI having access to the results from this research and helping to shape future direction.

Accounting