When you take the time to complete the Facial Pain Registry, you are doing far more than entering symptoms into a form – you are helping shape the future of care, research, and understanding for everyone in our community.
Launched in partnership with the National Organization for Rare Disorders (NORD®)’s IAMRARE® Program, the Facial Pain Registry is a bold step forward in capturing the real-world impact of living with facial pain. But once the data is entered, what comes next? How do we transform thousands of data points about lived experience into something that drives change?
To help answer this question, we have partnered with Oyanalytika, a data analytics firm with a mission grounded in both expertise and empathy. I recently sat down with Dr. Ena Bromley, their co-founder and CEO, who brings not only deep knowledge as a statistical geneticist and genetic epidemiologist, but also personal insight as someone directly impacted by facial pain. I first met Ena during Headache on the Hill in Washington, D.C., and together, we serve on the Alliance for Headache Disorders Advocacy Policy Committee advocating for the headache disorder community.
I asked Ena to help lift the veil on what happens behind the scenes and how the stories behind the numbers can fuel progress for the facial pain community and I am excited to share our conversation with you.
Interview with Dr. Ena Bromley, CEO of Oyanalytika
by Brandi Underwood
1. Why does data matter in our efforts to improve care for people with facial pain?
Data is our collective voice, quantified. For a long time, facial pain has lived in the shadows of medicine. It was misunderstood, misdiagnosed, and underfunded. When we gather and organize patient-reported data, we’re building sound evidence that researchers, clinicians, and policymakers need to take us seriously. It’s how we move from anecdote to action. Data allows us to tell a cohesive, credible story about what patients are really experiencing—and how care can and must improve.
2. What happens to the information once someone enters their data into the Facial Pain Registry?
Once data is entered, it’s securely stored and deidentified to protect patient privacy. From there, our team at Oyanalytika works with the Facial Pain Association to clean, standardize, and analyze that information. We use statistical and machine learning tools to look for trends—things like time to diagnosis, treatment responses, or common comorbidities. The goal is to turn individual data points into shared knowledge that can inform better clinical practice, guide research priorities, and support advocacy.
3. When you look at patient-entered data, what kinds of stories are you hoping to uncover?
I’m looking for patterns that reflect what patients have known all along but haven’t had the tools to prove — stories of delayed diagnosis, ineffective treatments, or journeys marked by resilience and trial-and-error. We want to uncover subgroups that might respond differently to certain therapies or share similar symptom clusters. Most of all, we’re listening for the common threads that unite this community across geography, diagnosis, and time.
4. What can we learn from patterns in the data that individual patients or clinicians might not see on their own?
A clinician sees a handful of patients at a time. A patient knows their own story in intimate detail. But when we zoom out with the registry, we can start to see broader signals—like which symptoms are most predictive of diagnosis, how long patients typically wait for effective treatment, or which treatments have high dropout rates. These patterns can guide everything from clinical decision-making to drug development strategies.
5. How can the registry help us advocate more effectively for research funding or policy change?
Policymakers and funders respond to data — especially when it’s well-structured and humanized. The registry provides both the statistics and the real-world context that make a compelling case for investment in research, treatment development, and healthcare access. It helps us say not just “people are suffering,” but “here’s how many, here’s what it looks like, and here’s where the gaps are.” That’s powerful.
6. Facial pain can be incredibly isolating. How does seeing data from hundreds or potentially thousands of patients begin to change that narrative?
It shows people they’re not alone. There’s immense validation in realizing your experience isn’t unique or inexplicable—it’s part of a broader pattern. Data has the power to connect, to affirm, and to destigmatize. For many patients, simply knowing that others have walked a similar path can be a turning point in how they see themselves and their condition.
7. For people who feel like their story has never been heard, how can data help amplify their voice?
Every entry in the registry is a voice added to the chorus. When those voices come together in structured data, they become impossible to ignore. They shape research questions, change treatment guidelines, and influence health policy. For someone who’s felt invisible in the system, contributing to the registry is an act of reclaiming agency—and knowing your experience could help someone else in the future.
8. How do you balance the technical aspects of analysis with the deeply personal nature of what this data represents?
With deep respect. Behind every data point is a person — a story, a struggle, a hope. As analysts, we bring rigor to the process, but we never forget the humanity in the numbers. Our team at Oyanalytika was founded on the principle that empathy and expertise must go hand in hand. Every model we build, every pattern we analyze, is done with the understanding that it represents real lives, and real suffering — and hopefully, real solutions.
9. Looking ahead, what excites you most about the potential of this registry to create meaningful change?
I’m excited by the possibility of precision care for facial pain — of moving beyond trial-and-error medicine to treatments that are tailored to subtypes, genetics, and individual needs. I’m also deeply inspired by the idea of building a lasting foundation for research — something future scientists can build on. But most of all, I’m excited for patients to feel seen, supported, and empowered. This registry isn’t just about data — it’s about dignity.
The stories shared through the Facial Pain Registry have the power to change what’s possible — for research, for care, and for how facial pain conditions are understood. Thanks to Dr. Bromley and Oyanalytika, we are beginning to connect the dots in ways that can lead to real progress. Every person who adds their voice is helping to create a clearer picture of life with facial pain. Thank you for being part of this important work.
