Current Research 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 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 are inviting around 12 people with TN and 12 health professionals to attend a virtual meeting in September 2023. The study team will use the finding from the meeting to form the structure of the new tool which will then be tested. Once it has been validated we will disseminate it among the dental profession.
2. Trigeminal Neuralgia 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
In this study, we will establish - based on electronic health records kept by UK GP practices - how many TN patients there are, where they are, and what ‘patient journeys’ (time to diagnosis, referrals, impact on patient) look like. We will identify early symptoms or patterns of misdiagnosis that could enable earlier referrals to TN specialists and appropriate treatment. This evidence will be used to establish specialist care in the UK. This will be the first time that the full journey from primary care to specialist centres will be assessed. NICE guidelines on neuropathic pain in primary care number 173 recommend that once carbamazepine has become ineffective or poorly tolerated patients should be referred to a specialist or a condition specific service. Thus it is important to establish if this recommendation is followed and what medications are being used. Results expected in June 2024.
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
This study has begun in the UK and internationally .
Project Needing Funding
The natural history of trigeminal neuralgia – 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
More Research Projects
We are looking for sponsors to support more research projects.
Last updated 18.8.23