This post kicks off our new series, Truveta Experts— a spotlight on the data scientists, researchers, clinicians, and analysts working behind the scenes to drive healthcare research forward with real-world data.

Our first contributor is Mantas Dmukauskas, PhD, a research analyst on Truveta’s Partner Research & Success team. Mantas holds a PhD in physics from Vilnius University and previously served as a postdoctoral fellow at the National Cancer Institute, where he led projects using cancer registries and insurance claims data. After partnering with Truveta on a research project exploring Mantas joined full-time to help more researchers unlock insights from real-world clinical data.

His latest insight from Truveta Data was inspired by his wife—an oral medicine specialist and reveals a disconnect in the treatment of a rare but life-altering condition: trigeminal neuralgia.

Trigeminal neuralgia: Still under-treated in real-world practice

Trigeminal neuralgia (TN) is a chronic neuropathic pain disorder defined by sudden, stabbing pain across one side of the face—often triggered by simple actions like talking or brushing teeth. (Mantas’ wife, a doctor in oral medicine, often sees TN patients in her practice that have been referred to her with a misdiagnosis and lack of awareness of their treatment options.) The pain from TN is so intense that it is often compared to an electric shock.

While rare (affecting ~150,000 people annually in the US), TN’s impact on quality of life is profound.

First-line therapies are clear. But are they being used?

Clinical guidelines recommend carbamazepine and oxcarbazepine as first-line therapies. These medications have been proven to reduce TN pain, are low cost, and can be taken orally, yet real-world data shows these treatments may be underused. 

What Truveta Data shows

To better understand how many patients diagnosed with TN are receiving first-line treatment, Mantas was able to quickly build a population of over 134,000 patients who were diagnosed with TN between 2017 and 2024.

Here’s what he observed for first-line therapy initiated within 90 days:

  • In 2017, only ~24 % of diagnosed patients started first-line treatment within 90 days.
  • By 2020, that number rose to just ~28%, and has stagnated since.
  • 60% of diagnoses occurred in adults aged 45–74.
  • Majority of diagnoses (65%) occurred in women, reflective of the literature.
trigeminal neuralgia RWD RWE dental medicine oral medicine
trigeminal neuralgia RWD RWE dental medicine oral medicine

Insight

Despite strong evidence and clinical recommendations, the adoption of first-line TN therapy remains far below optimal —and it’s not improving over time.

This raises important questions for clinical and pharma teams alike:

  • Are there barriers to diagnosis or prescription?
  • Do providers lack confidence in these therapies?
  • Are patients discontinuing due to side effects, cost, or other factors?

Real-world data like Truveta’s can help answer those questions—and guide better outcomes.

Opportunities for further research

  • Alternative treatments: Emerging therapies like Botox show promise in clinical studies, though not yet FDA-approved for TN.
  • Root cause analysis: MRI scans may help identify structural causes like multiple sclerosis or tumors. With the largest collection of medical images integrated with real-world data, Truveta offers a unique opportunity to study diagnostic patterns at scale.

Stay tuned for more Truveta Experts, where we share real-world evidence and analysis from the people powering Truveta’s mission.

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