The FPA Patient Registry

The MAB Corner – By Wolfgang Liedtke, MD, PhD

Dear members of the Facial Pain Association,

I’d like to give you my take on the FPA patient registry, which is in the pipeline.

I wholeheartedly endorse it and enthusiastically encourage you to join to help the entire community and make your own contribution toward our fight against trigeminal nerve pain/oro-cranio-facial pain.

The initial setup of the registry is currently being finalized and will house deidentified data on clinical phenotype (characteristics) of patients with trigeminal nerve pain/oro-cranio-facial pain.

Needless to say, it will only work if you participate and if you answer the questions as completely and authentically as possible. I remain very enthusiastic about the registry because it is a highly constructive asset that we can bring to the table as a community. I hope that some of my explanations below help you come to a decision about your future participation.

What, why, how, and caveats:

De-identified patient data means that the initial entry into the database will be conducted so that the entry cannot be traced to the individual submitter. Completely separate and uncoupled from the de-identified entry into the registry, we will set up a file that will allow de-identified entries to be reconnected with the person who is behind the entry. This will serve the purpose of requesting additional information, accessing additional medical data/information that might be available, or laying out opportunities to participate in specific studies if the need ever arises. The link to re-associate the de-identified data with the real person will be kept as safe as can be, not only leveraging encryption, but an extended armamentarium of tech-tools against illicit access to this sensitive information. People who provide their entries into the de-identified data set will also be given the option to be excluded from the re-identifying mechanism.

Clinical phenotype refers to everything relevant to the pain that you suffer and to your medical history: life habits as they pertain to your pain, possible sources of inflammation, and general sensitivity of your nervous system, to pain stimuli and your family history of pathologic pain, as well as other hereditary traits that might be relevant for understanding your pain.

All of these health-related issues will be queried in a standardized manner that will transform your answers into metrics (quantitative where possible). That’s the pain phenotype that we want to establish from each entrant. This will allow us to derive powerful metric outcomes, then meaningfully combine single parameters into composite indices of pain in multiple contexts, e.g. in the context of other diseases that you also have (co-morbidities), in the context of family liability to pathologic pain, inflammatory and other relevant disorders (e.g.) Ehlers Danlos Syndrome, Lupus). There is power in numbers, and that is where the unique opportunity lies here.

Your data will be captured via the FPA website with secure interface, and possibly an app for mobile device enabling.

There should be no caveats if we execute this correctly, leveraging the technology to our advantage.


Existing general health patient repositories have been coupled with medical records and exploration of specific biospecimens, e.g. British Biobank or FinnGen. This will be a future option and will benefit from generating even deeper experiences beyond the astounding success that has already been accomplished. Both biobanks essentially couple clinical phenotypes with biological metrics that have already been conducted, e.g. brain MRI scans and measurements in blood. Undoubtedly the most powerful and promising method is DNA genomic sequencing. Sequencing a patient’s exome, essentially the part of their genome that codes for proteins, will be a powerful, practical, and fiscally feasible way forward. In addition, blood proteomics data now can be derived on less than 1 milliliter of serum, currently allowing measurements of several hundreds of proteins (very soon several thousand) that can be detected and quantified. Costs for these measurements have come down drastically (not to be carried by the patient, in any case, to be clear). Of course, this will only work by adhering to the informed consent principle, and to the de-identification principle that already guides the data entry.

What could come out of this?

A previously considered unthinkable analysis of clinical phenotypic data can provide clues about disease biology that we currently have no idea and/or certain misconceptions about, and where we are in dire need of reality-based corrections. Starting from there, numerous call-back studies can be envisioned, such as requesting relevant details of the pain phenotype that have not been asked, obtaining and digitally archiving associated existing MRI scans in selected cases. We are excited to clearly see a beacon on this hill in the not too distant future: assessment of systemic proteome and protein-encoding genome of a large cohort of trigeminal nerve pain/oro-cranio-facial pain patients. I am saying “beacon on the hill” because this approach has transformative power for getting things done in the pain arena that were unthinkable not that long ago.

This is from my perch as a corporate executive in biotech-pharma (with my employer Regeneron having a dedicated interest in pain), previously having enjoyed decades of working together with my patients as academic health center physician, and in my laboratory as basic science researcher (at Duke University), with my focus on trigeminal nerve pain/oro-cranio-facial pain.

Finally, we believe there is no other stakeholder more suitable than us at the FPA to get a patient registry off the ground, to own it responsibly and ethically, to be independent of vested interests (including commercial, academic, governmental), and to maintain and run it successfully.

Please share your thoughts with the FPA at [email protected] as we put the finishing touches on our patient registry.

My best,

Wolfgang Liedtke, MD, PhD

Dr. Liedtke is a member of the Facial Pain Association Medical Advisory Board. At Regeneron Pharmaceuticals, he is Chair of Neurology, Psychiatry, Pain Medicine, and Sensory Systems, and a member of the Global Development Scientific Council.

(Opinions expressed here do not represent the view of Dr. Liedtke’s employer, Regeneron Pharmaceuticals nor of his academic affiliates, Duke University and New York University College of Dentistry.)

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