Patients

Are you suffering from Trigeminal Neuralgia? Do you wish to help now?

Patients are encouraged to take part in research to improve not only our management of trigeminal neuralgia but also to find and improve cures. Here are two projects for which we are now seeking patients:

New Drug for Trigeminal Neuralgia

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.

IRAS project ID: 1004344
Protocol number: NOE-TGN-201 REC reference: 22/YH/0013
Sponsor Noema Pharma

This study has begun in the UK and internationally .

For more on how to take part contact the St Pancras Research centre https://stpancrasclinicalresearch.com/trigeminal_neuralgia/

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

Development of the new tool

We will start with a consensus meeting. The purpose of the meeting is to bring together experts in Trigeminal Neuralgia ("TN") (people with TN and health professionals) to decide on the key questions that should be included in a new tool that can be used by a dental practitioner to help identify if a patient may have TN. The meeting will be held using Microsoft Teams or a similar conferencing facility that provides options for breakout sessions and anonymous voting facilities. We aim to have around 12 people with TN and 12 health professionals (facial pain specialists, neurologists, and dental practitioners) attend the meeting. It is anticipated that the meeting will last up to four hours.

The meeting will begin with an introduction to the study and participants will be briefed on the purpose of the new tool. We will provide an overview of the content of any existing tools used for TN and other oral facial pain conditions and send a summary of our recently completed review of tools in advance of the meeting.

Next participants will be randomly allocated to small groups of between 6-8 participants. Each group will have an experienced facilitator and a scribe trained for the consensus process and an expert available to help with any clinical questions.

Participants will work in their small groups to decide what questions are important to include in the new tool. The facilitators will ensure that the people with TN are fully involved and have an equal voice throughout the meeting. The key questions to be discussed will be those proposed by an international group of TN experts and patients. Special emphasis will be placed on the choice of words so the tool can be self completing and not require input from healthcare professionals.

We will then bring all the groups back together and ask them to vote (anonymously) on which questions/ potentially wording to include. The meeting will be recorded but not transcribed to ensure the correct questions are identified.

After the meeting the study team will use the results of the meeting to form the structure of the new tool which will then be circulated by email to participants for any further feedback and refinement. Another study defining the core outcomes for patients with TN found that patients considered it important for healthcare professionals to be more aware of this condition and refer patients earlier to specialist centres.

If you are interested in participating please email jzakrzewska@nhs.net or write to us.

Who will be the Institute's Patients and how will they be seen?

Patients will be referred from primary care, doctors and dentists, primary care specialists with a special interest in neurology, and other specialists who have made a presumed diagnosis of trigeminal neuralgia. Sufferers will also be able to self-refer. Patients will complete an online specifically developed screening questionnaires to determine if they do potentially have trigeminal neuralgia. Those patients who have a possible diagnosis of trigeminal neuralgia will then take part in a video linked telemedicine consultation. A patient agreed treatment plan will be formulated and then discussed and managed at identified NHS centres of excellence. Patients will be managed using national guidelines approved by all major UK stakeholders. Patients will be asked to register on a database and complete an annual survey to monitor their outcomes. This data will provide long term data to improve research and enable more accurate prognoses to be made.

Patient contact

Patients should contact Professor Joanna Zakrzewska on jzakrzewska@nhs.net

For general support patients should contact Trigeminal Neuralgia Association UK ("TNA")

Last updated 30.8.23