What we do
What we do now
Advance research programmes into the causes, diagnosis and management of Trigeminal Neuralgia (TN)
- We are conducting a health economic analysis of the cost-effectiveness of implementing strategies to speed up the diagnosis and early implementation of effective treatment strategies for TN
- We are conducting an epidemiology analysis of NHS databases to find out, how many patients there are with TN and how they are currently treated. (in collaboration with LifeArc)
- We are supporting the development of a TN screening tool
- Act as key opinion leaders and advisors for TN clinical trials
What we aim to do as we grow the TNI
- Train healthcare professionals to deliver specialist, high-quality TN care according to a care pathway that has been developed and tested.
- Provide all TN patients with a high-quality advisory service for diagnosis and management.
- Provide all TN patients with a map and details of centres of excellence throughout the country which run according to the nationally approved guidelines.
- Implement a national patient registry to track outcomes, audit care, and accelerate research.
The future of TN care in the UK
Our vision is to create a virtual TN national institute bringing together multidisciplinary expertise to ensure that every patient across the country receives a correct and timely diagnosis and an evidence-based, patient-centred, multidisciplinary management plan, delivered through centres of excellence.
The TN Institute will align with the “Getting It Right First Time” (GIRFT) programme (Chronic pain - Getting It Right First Time - GIRFT), which has an aim to ensure patients receive personalised, holistic and evidence-based care at each stage, with seamless transitions between services – in turn, improving the patient experience.
A national registry for both patients and health care providers will underpin continuous outcome monitoring, service improvement and high-quality research.
Building the Institute
The TN Institute is being developed in phases, supported by a broad funding strategy for each of our core pillars, which are;
The impact will be both clinical and economic: fewer consultations, alongside an increase in access to appropriate treatments, will result in a faster return to work, a resumption of the activities of normal daily living and improved mental health. All patients will be encouraged to take part in research to improve not only our management of trigeminal neuralgia but also in finding causes of this terrible disease.
The TN Institute is guided by the Faculty of Pain Medicine’s simple principle “the right patient should be with the right professional at the right time with timely passage from one to the other.”
The TN institute will work closely with patient support groups which would enable patients to meet fellow sufferers and obtain help through telephone and email advice.
What TN institute will deliver
- Provide a diagnostic service and treatment planning for all patients with TN either face to face or through web-based methods using video linkage. This will ensure they have the correct diagnosis and so can start on their personalised care pathway.
- Provide innovative education courses, presentations at conferences for healthcare professionals and patients to improve diagnosis and care both in primary care and specialist settings using e- learning techniques as well as face to face courses.
- Will determine how patients are managed throughout the UK both in primary and secondary care and then provide evidence of how this service has been improved by the activities of the TN Institute
- Establish a network of NHS multidisciplinary centres throughout the UK to which patients can be referred. These centres would include neurosurgeons, neurologists, oral physicians, pain physicians, neuroradiologists, pharmacists, clinical nurse specialists, psychologists, physiotherapists. The services will be regularly audited to ensure they provide high quality of care according to the national guidelines.
- Set up a Registry for both patients and healthcare professional and collect data on an annual basis to monitor outcomes and provide data for research. The core outcomes have been established. An international registry would allow for large data analysis.
- Will be part of research programs running both nationally and internationally which will involve patients as co designers.
Research
Our research focuses on improving the recognition, diagnosis, treatment and long-term management of trigeminal neuralgia. The projects below describe current studies, future research priorities and patient-facing opportunities to take part in or learn about new developments. We will start our own research projects alongside collaborating with other leaders in the field of trigeminal neuralgia.
Current projects
1. Co-production of a new tool to support the identification and diagnosis of trigeminal neuralgia in primary dental care.
UCL Research Ethics Committee Approval ID Number 7713/006
Funded by British Pain Society
Trigeminal neuralgia (TN) is an excruciating, intermittent facial pain condition that usually affects one side of the face. Because its symptoms can closely resemble toothache, many people initially seek help from their dentist. Diagnosing TN can be challenging, particularly when symptoms first appear, as it can be difficult to distinguish from other forms of dental and facial pain. As a result, some patients undergo unnecessary dental treatment and may face many years wait before receiving an accurate diagnosis and appropriate treatment.
The aim of this study is to develop a practical tool that will help dental practitioners identify and diagnose trigeminal neuralgia more effectively, enabling earlier referral and access to appropriate care. In September 2023, nine people living with TN and twelve healthcare professionals participated in a virtual focus group. Together, they identified the most important questions to include in a diagnostic screening tool for use in dental practice.
The resulting tool comprises 15 questions designed to support the identification of trigeminal neuralgia. The next stage of the project is to validate the tool to ensure its accuracy and effectiveness before it is disseminated more widely across the dental profession
2. Validating a screening tool to differentiate between non-dental and dental causes of orofacial pain
UCLH ethics approval 357989
ClinicalTrials.gov ID NCT07453511
Funded by British Pain Society
This study builds on the development of the tool and will now be validated in 250 patients coming for the first time to a hospital for management of their face, oral and dental pain. The study started in July 2026
3. TNEPIX: Informatics programme using health records to understand trigeminal neuralgia occurrence, patient journeys, healthcare impact and diagnosis.
Funded by LifeArc
This study will use electronic health records from UK GP practices to estimate how many people have trigeminal neuralgia, where they are, and what their patient journeys look like, including time to diagnosis, referrals and impact on patients. It will also examine early symptoms, possible misdiagnosis patterns, treatments and longer-term outcomes. The evidence will help determine whether TN should be classified as a rare disease and whether specialist centres are needed in the UK. Results are expected in August 2026.
4. The natural history of trigeminal neuralgia – a long-term cohort study
Ethics approval: IRAS Number 220668, REC Reference No 07/MRE01/38 Previously funded by Biogen Inc.
Trigeminal neuralgia (TN) is a rare condition managed both medically and surgically. Although neurosurgeons report surgical outcomes, there is very little evidence on how the disorder progresses over time or on the impact of medical management. This study currently runs only at UCLH NHS Foundation Trust in London and follows patients with TN who are referred to the Trust. Patient data is entered into a database, and regular questionnaires are collected to assess current outcomes. These data help determine the burden of disease and whether national and international guidelines meet patient needs. With a larger dataset, the study could support more patient-centred care, help people take control of their long-term condition and inform appropriate decisions about treatment. A care pathway has been established and tested at UCLH and could now be adopted by other UK secondary care centres that see these patients. An interim analysis using these data has been conducted and published. The cohort has now grown to more than 300 patients and would benefit from being developed into a national programme with a shared database.
Publications from this study
1. Zakrzewska JM, Wu J Mon Williams M, Phillips N. Pavitt SH Evaluating the impact of trigeminal neuralgia. Pain 2017, 158: 1166-1174. doi: 10.1097/j.pain.0000000000000853
2. O’Callaghan L, Floden L, Vinikoor-Imler L, Symonds T, Giblin K, Hartford C, Zakrzewska JM. Burden of illness of trigeminal neuralgia among patients managed in a specialist center in England. J Headache Pain. 2020;21(1):130. Doi: 10.1186/s10194-020-01198-z
Clinical trials
1. Drug trial Libra
Title: A Phase II/III, multicentre study to evaluate the efficacy and safety of basimglurant in patients with trigeminal neuralgia
IRAS project ID: 1004344
Protocol number: NOE-TGN-201 REC reference: 22/YH/0013
Sponsor Noema Pharma
This study has run in the UK and internationally and has now closed. A further study is planned to start at the end of 2026.
2. Study to validate an electronic diary
Ethics approval UCL 7713/005
ClinicalTrials.gov (Identifier: NCT06019338)
In previous drug trials, patients had to keep daily paper diaries for many weeks. This was an onerous but important task. As part of the Libra study, an electronic pain diary was developed and validated to record pain and its impact on activities of daily living. It was used in the Libra study and could now be used to help patients with TN monitor their response to treatment.
Publication https://doi.org/10.22514/jofph.2026.038
Future projects
1. Identifying centres of excellence
To ensure equitable NHS care across the UK, centres of excellence should be established where patients can be seen in a multidisciplinary setting. These centres should include headache neurologists, pain physicians, pain specialists, oral physicians, clinical psychologists, clinical physiotherapists and advanced nurse practitioners.
2. Developing an electronic diary for monitoring
Further development of electronic pain diaries could include a wearable watch. This could help patients record pain patterns, monitor the effects of treatment and identify dosage schedules that provide maximum benefit with the fewest side effects.
3. National registry
A national registry would allow people with TN across the UK to contribute baseline and annual data. This would help establish whether patients are being managed according to national guidelines and identify where care could be improved.