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American Migraine Foundation Creates First Comprehensive Registry For Patients With Migraine

Jaime Rosenberg
The large-scale patient registry and biorepository includes patient information and biological samples and leverages machine learning to track the progress of patients over time.
It’s estimated that over 37 million people in the United States experience migraine. Despite the fact that patient registries having the ability to improve the understanding of the condition, a large, comprehensive, multicenter registry for migraine has been lacking. Noting the absence, the American Migraine Foundation (AMF) has created the first large-scale patient registry and biorepository for migraine in the United States.

In conjunction with ZS—a marketing consulting company—AMF has also built a first-of-its-kind technology solution that collects clinical and biological information from patients with migraine.

The American Registry for Migraine Research (ARMR) is a database that contains information about patients diagnosed with migraine, such as their age, gender, migraine type and characteristics, severity and frequency of attacks, treatment history, family history, and other medical information.

The database also incorporates biological samples with the hopes of better understanding the genetic factors that influence the expression of migraine and potentially lead to the discovery of blood biomarkers that will aid in the diagnosis and identification of new treatment.

“We hope to learn who is at risk for progression, the factors that predict the response to treatment, who is at risk for the development of other serious diseases associated with migraine such as stroke and depression, and how to best prevent these outcomes,” said David Dodick, MD, AMF Chairman and ARMR co-director, in a statement.

In addition to providing research potential, the registry also opens the door to improving patient care, as physicians and other healthcare providers will now have access to both historical and up-to-date information on their patients, he added.

The registry leverages machine learning and utilizes patient-reported outcomes, electronic health record and physician-recorded data, and a mobile headache diary to track the progress of patients over time, providing researchers with insight into how migraine is affecting patients’ daily lives.

“ARMR’s comprehensive, longitudinal data may help researchers better understand the genetic underpinnings of migraine and other headache disorders as well as factors that influence the disease course and response to various treatments,” states a press release from ZS. “ARMR’s mission is to propel knowledge that translates into benefits for patients by providing real-world evidence that healthcare providers can use to develop solutions for individual patients.”

The registry is currently enrolling patients at The Mayo Clinic in Phoenix, Arizona and The University of Texas Health Science Center at Houston in Houston, Texas.

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