Current Research Projects
1. Co-production of a new tool to support the identification and diagnosis of trigeminal neuralgia ("TN") 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 pain, usually affecting one side of the face. The pain is often confused with tooth pain, and many people seek help from the dentist. Diagnosing TN is challenging for dentists because it can be difficult to distinguish from other types of dental and facial pain. This is especially difficult when the condition presents itself for the first time. People can have unnecessary dental treatment and it can sometimes take years to get an accurate diagnosis and start the right treatment.
The aim of this study is to produce a new tool to help dentists to identify and diagnose TN more effectively and be able to refer patients for the help they need in a more timely manner.
We invited 8 patients with TN and 12 health care professionals to attend a virtual focus group meeting in September 2023. This enabled us to prepare a screening tool of 15 questions. We are now seeking ethics approval to validate the screening tool in 250 patients attending UCLH for facial pain or dental pain. Once it has been validated we will also disseminate it among the dental profession.
2. TN epidemiology and informatics for characterising disease occurrence, patient journeys, healthcare impact and early diagnostic indications as an evidence package for establishment of UK specialist care centres TNEPIX
Funded by LifeArc
We now have preliminary results for this study funded by LifeArc. Based on electronic health records kept by UK GP practices we have established that in 2022 there were 45,000 patients as diagnosed by ICD10 Code G50. We know that patients with the condition are distributed throughout the UK with relatively low numbers recorded in London. As with other international data there is a predominance of women and the commonest age range is 60 to 70. It is very rare in under 18-year olds. Up to 50% of patients may receive the NICE recommended treatment of carbamazepine and under 10% undergo a surgical procedure. Using machine learning we have established predictors for developing TN and also risk factors for those with the disorder. Once the data has been published this will be used to establish specialist care thoughout the UK . This will be the first time that the full journey from primary care to specialist centres will be assessed. It will enable the implementation of NICE guideline number 173 recommending that once carbamazepine has become ineffective or poorly tolerated, patients should be referred to a specialist or a condition specific service. Full results are expected by the end of 2026.
3. Drug trial Libra
Title : A Phase II/III, multicentre, 8-week run-in phase followed by a 12-week, prospective, parallel-group, double-blind, randomized withdrawal, placebo-controlled study, with a 52 week open label extension, to evaluate the efficacy and safety of daily 1.5 to 3.5 mg basimglurant in patients with pain associated with trigeminal neuralgia with suboptimal response to their current anti-pain therapy.
Sponsor Noema Pharma
IRAS project ID: 1004344
Protocol number: NOE-TGN-201 REC reference: 22/YH/0013, listed on the Clinical Trials website.
This study has been completed in the UK and internationally. Results are expected by the end of 2026.
4. Electronic Pain Diary
This pain diary for patients suffering from TN has now been validated and is currently used in the Libra study above.
Projects Needing Funding
1. The natural history of TN – a long term cohort study
Ethics approval : IRAS Number 220668, REC Reference No 07/MRE01/38
Previous funder : Biogen
New sponsor needed.
Trigeminal neuralgia ("TN") is a rare disease managed both medically and surgically. Although the neurosurgeons report on surgical outcomes for this condition there is virtually no data on progress of the disorder over time and the impact of medical management. Currently this study is run only at UCLH NHS Foundation Trust London . It aims to follow up all patients with TN who are referred to the Trust. Patient data is entered into a database and regular questionnaires to determine their current outcomes are collected. This data enables us to determine the burden of disease and whether the current national and international guidelines are appropriate. With larger data the needs of this patient group can be ascertained so that patient centred care can be delivered with patients taking control of their long term condition and making appropriate decisions. A care pathway has been established and tested at UCLH which could now be adopted by all secondary care centres in the UK that see these patients.
An interim study has been conducted and published using this data but the cohort has now extended to over 300 patients and would benefit from becoming a national program with a 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
2. Centres of Excellence
Setting up centres of excellence throughout the UK with multi-disciplinary teams including headache neurologists, oral physicians, pain physicians, neurosurgeons, clinical nurse specialists, clinical psychologists, and clinical physiotherapists. This would enable care pathways following national guidelines for TN such as the one establised at UCLH to be replicated throughout the UK.
3. Economics of TN
Currently, patients consult a wide range of specialists before finally obtaining a correct diagnosis and management according to the national guidelines. This is expensive for the NHS and for patients becoming increasingly disabled by their condition. We want to compare the current cost of this prolonged care pathway and how this can be significantly reduced by instituting the "Getting It Right First Time" (GIRFT) principle.
More Research Projects
We are looking for sponsors to support more research projects such as:
1. A national registry of all patients with TN to monitor longitudinal data.
2. Evaluating best treatment outcomes in line with establishing the important outcome domains as reported the study on Defining Core Outcomes.
3. Further drug trials.
Last updated 7.1.26