Welcome to the Facial Pain Registry!

The Facial Pain Registry belongs to YOU. Your experiences tell a unique story and the data within your story are critical to understanding the nature of facial pain. Your participation in this registry can help to strengthen the voices of the facial pain community. Your contributions in areas of diagnosis, symptoms, treatment, medications, and more can make a real difference.

Your Voice Matters. Let data tell your story.

Why Is the Facial Pain Registry Important?

“The Facial Pain Registry is a great opportunity for the facial pain community to tell their unique stories and let data inform the work being done by researchers. The success of the registry is dependent upon community participation. Our goal is to enroll anyone, and everyone affected by neuropathic facial pain, including trigeminal neuralgia and other cranial neuralgias.”

Melissa Baumbick

CEO of the Facial Pain Association

“The patient registry is called a PATIENT registry because it belongs to the patients or people with neuropathic facial pain (NFP). The registry will give people with facial pain a voice. It will collect data through a series of online questionnaires. Questions will be about our community’s actual experience—our symptoms, medical care, treatments, and how we live with NFP. No one else has information about what it is like to live with facial pain. We are the experts!”

Anne Ciemnecki

Patient Registry Advisory Board Member

“The FPA Patient Registry will be a unique smart weapon in our encounter with “refractory” facial pain. It will deliver to us building blocks to empower and accelerate transformative therapeutic progress against a truly nasty foe.”

Dr. Wolfgang Liedtke

Patient Registry Advisory Board Member

"The Facial Pain Registry can be a powerful tool for advocacy, providing concrete data to influence policy changes, research funding, and improve care for people with facial pain.”

Brandi Underwood

Facial Pain Registry Co-Principal Investigator

“Health registries, like the FPA’s registry, are challenging, from many perspectives to develop and maintain. Challenges include ethical concerns (patient privacy), costs associated, and poor individual participation. And yet, the rewards of a well-organized registry of a group of individuals who share a common disease are nearly limitless.”

Dr. Raymond Sekula

Patient Registry Advisory Board Member

“The FPA has been trying to launch a patient registry for many years. Establishing a registry like this is a significant challenge for any organization, let alone one of our size, so this launch is monumental. You will have the opportunity to help the medical community gain access to clear, statistically significant data that could play a role in their efforts to create more medications, procedures, and therapies to reduce or eliminate our pain.”

David Meyers

Patient Registry Advisory Board Member

Welcome to the Facial Pain Registry!

Your Voice Matters. Let data tell your story.

For Patients

For Healthcare Professionals

Why Is the Facial Pain Registry Important?