Research
needs patients.
TNA UK welcomes enquiries from universities, NHS researchers and responsible commercial partners seeking meaningful input from people affected by trigeminal neuralgia. We begin by establishing the research question, what patients could contribute and how their involvement would be supported.
AREAS FOR COLLABORATION
Patient experience
drives better questions.
People living with trigeminal neuralgia can identify overlooked problems, challenge assumptions about daily life and help make research information understandable. Their experience should inform a study without being confused with clinical evidence of treatment effectiveness.
Discover our prioritiesWAYS TO COLLABORATE
Meaningful involvement. Stronger research.
A productive first conversation should establish the purpose, patient benefit, responsibilities and resources. Depending on the project and the charity’s capacity, possible contributions include:
Patient and Public Involvement and Engagement (PPIE)
Potential output: a proportionate PPIE plan describing agreed patient roles, accessible participation and appropriate support or reimbursement where funded.
Explore patient voice 02Research priorities and feasibility
Potential output: a patient-priority and feasibility brief, identifying unmet needs and questions for appropriate scientific investigation.
Explore the research 03Patient information and communications
Potential output: structured patient feedback on study information and plain-English summaries, with responsibility for scientific accuracy remaining with investigators.
Read our safeguards 04Responsible research awareness
Potential output: a responsibly reviewed communications or webinar plan for appropriately governed studies. Trial teams retain all recruitment and consent responsibilities.
Start a conversationPATIENT TRUST FIRST
Independent, ethical and transparent.
Patient involvement is not the same as taking part in a clinical study. TNFP does not guarantee recruitment, sell patient lists or promise access to identifiable patient information.
Any proposed commercial or academic collaboration must protect the charity’s independence, have a defined scope and appropriate governance, and comply with relevant data-protection and research requirements.
Support from an organisation must not determine clinical information, patient advice or the charity’s independent positions. Specific deliverables can only be agreed after assessing capacity, suitability and safeguards.
PATIENT INVOLVEMENT AND ACCESS TO TREATMENTS
Patients deserve a seat at the decision-making table.
Patient experience matters not only when researchers design studies, but also when health systems assess treatments, reimbursement and access to medicines. An October 2026 international PatientView survey, A Seat at the Pricing Table, reports that 44% of 2,262 surveyed patient groups in 100 countries said they regularly or sometimes represented patient interests to drug-pricing regulators.
This is PatientView’s research, not evidence that TNFP has taken part in a particular appraisal. TNFP supports appropriately governed patient involvement, accurate submissions and independent contributions to research and policy discussions where the charity has relevant evidence.
Read more about PatientView · Learn about involvement with NICE
START A CONVERSATION
A serious invitation to collaborate.
If you have a research idea, tell us what question it addresses, who would lead it, what patients would be asked to do and how their involvement would be funded and protected. We can then decide whether a further discussion is appropriate.
To explore a research partnership, contact TNA UK with your organisation’s details, the research question, proposed patient involvement and anticipated benefit. We will discuss whether the opportunity is appropriate and feasible.
What TNFP contributes
TNFP brings experience of patient support, listening to people living with trigeminal neuralgia and communicating research opportunities. Our work on the Libra study is one documented example of patient engagement. We can discuss a defined role in a new project, but each proposal needs an agreed scope, resources and safeguards.
Unmet patient needs
Our support networks and patient survey evidence help identify unmet needs. The documented Libra engagement shows that patients have also chosen to express interest in research. Participation is always voluntary.
Meaningful involvement
We can explore patient input into research priorities, study design and information materials, and share suitable research invitations through appropriate channels. Taking part is always a personal, voluntary decision.
Clear communication
Explore ways to explain studies and findings accurately and accessibly, without promoting unproven treatments.
A partnership in practice: the Libra Study
TNA UK supported patient engagement around the Libra Study (NCT05217628), a Noema Pharma-sponsored clinical trial investigating basimglurant for trigeminal neuralgia.
We organised a London training session for helpline volunteers and Regional Support Group leaders, brought clinical expertise into those briefings, and supported study communications and a patient webinar. The work helped people hear about the research and understand where to seek official study information.
Our role was patient communication and engagement. The sponsor and research teams remained responsible for recruitment, eligibility, consent, clinical care and participant safety.
Research engagement
400+
Expressions of interest reported during the Libra engagement.
320+
Attendees at the related patient webinar, according to TNA UK’s published figures.
These figures describe engagement, not clinical-trial enrolment or treatment outcomes.
Who we work with
From early research ideas to funded programmes, we welcome partners who are prepared to listen to patients and define a meaningful role for their involvement.
Partnerships should move research closer to what patients need.
We can discuss patient involvement from the earliest stages of a project, with clear responsibilities, appropriate funding and transparent safeguards.
Universities and academic researchers
Patient involvement in research priorities, grant development, study materials, outcomes and dissemination.
Pharmaceutical and biotechnology companies
Independently governed patient input into the development and evaluation of treatments and research communication.
Clinical and international institutions
Collaboration on diagnosis, care pathways, professional education and work with a clear benefit for patients.
Evidence grounded in lived experience
Our patient surveys contribute important evidence about diagnosis, treatment, daily life and unmet need. They are self-selected surveys, not national prevalence studies, and do not establish clinical treatment outcomes. The 2026 report remains a publication candidate pending independent specialist review.
Explore the original patient evidence, its limitations and our wider research engagement in one place.
Patient evidence
2026 survey and continuing research engagement
567
Earlier survey
2024–25 Patient Experience Survey
Research partnerships and funding
We welcome discussions about funded patient involvement, collaborative grant applications and projects addressing evidenced patient needs. Depending on a project’s purpose, ethical approvals and our capacity, this could include patient-priority workshops; reviewing study information; input into questionnaires and outcomes such as treatment burden, daily function and quality of life; briefings for relevant volunteers; research webinars; or clear explanations of findings. The role, safeguards, funding and evaluation would be agreed before work begins.
01 · Share your proposal
Tell us the research question, project stage, expected benefit and patient role you envisage.
02 · Agree the contribution
Discuss what patients can influence, governance arrangements and the charity’s capacity.
03 · Scope the funding
Agree deliverables, staff time, patient contributor costs, accessibility and evaluation.
TNFP does not sell patient data, guarantee recruitment or endorse medicines in exchange for funding. Any partnership must protect patient choice, scientific integrity and charity independence.
Read the supporting research
For scientific developments and trials, visit the Research Hub. For our own published patient evidence and engagement work, visit Research & Patient Voice.
Research Hub
Current trigeminal neuralgia studies, clinical trials and emerging evidence.
Research & Patient Voice
Patient surveys, research engagement and what our community has told us.
Start a research partnership conversation
To request a discussion with our Chief Executive, please use the charity’s contact form. Begin your message with ‘For the Chief Executive Officer – Research Partnership’ and include your organisation, proposal, the contribution sought from TNFP and whether project funding is available.
Aneeta Prem MBE
Chief Executive Officer
TNFP – The Facial Pain Charity
Trigeminal Neuralgia Association UK
Registered charity in England and Wales: 1155001. Support TNFP’s patient evidence, support and research engagement through a donation →