—The American Migraine Foundation and ZS have partnered to create one of the most comprehensive registries to study migraine and other headache disorders—
EVANSTON, Ill. – April 26, 2018 – Patient registries can significantly advance the understanding and treatment of a particular disease. According to the American Migraine Foundation (AMF), migraine is estimated to affect more than 37 million people in the U.S., however, a large, comprehensive, multicenter patient registry has not existed until now.
AMF has developed the first large-scale U.S. patient registry and biorepository for migraine. With ZS, the AMF also has built a first-of-its-kind technology solution that sets out to collect a broad range of clinical and biological information from patients with migraine and other headache disorders, and to study that information over the course of an extended period of time. According to AMF’s chairman and the registry’s co-director, Dr. David Dodick, it’s “one of the most comprehensive registries ever built for this disease.” AMF’s American Registry for Migraine Research (ARMR) incorporates biological samples, leverages machine learning, and utilizes patient-reported outcomes, electronic health record and physician-captured data, and a mobile headache diary application to track the progress of patients over time.
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. 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. In addition, ARMR will offer a massive resource for clinicians and scientists around the world to collaborate and conduct research.
There are many examples of successful registries that have positively impacted the lives of patients, and ARMR is uniquely poised to improve the experience for patients with migraine and other headache disorders. “We still have a long way to go in advancing the care of migraine patients,” says ZS Associate Principal Lisa Bance. “Advancing care includes better diagnostic tools, greater awareness of the disease, better tolerated and disease-specific treatments, and a greater sensitivity to the impact of the disease on the lives of those with migraine.”
“While the research potential of this registry is enormous, it also has the very real potential to improve patient care,” Dr. Dodick says. “Physicians and other healthcare providers will now have historical and up-to-date information on their patients at their fingertips,” which will aid in diagnosis and treatment.
Dr. Dodick believes that the registry will impact the treatment of patients with migraine and other disabling headache disorders well into the future. “We hope to learn who is at risk for progression, who is at risk for the development of other serious diseases associated with migraine such as stroke or depression, and how best to prevent these outcomes.” AMF also hopes to usher in an era of precision medicine in this area by being able to identify the treatments that will provide the most benefit without causing harm to the patient. “We also hope that this registry improves disease awareness around the world, attracts more clinicians and scientists into the field, and fosters collaborative research by making the database available and open to investigators around the world.”
What makes ARMR unique from other registries is the depth of information that it collects for analysis. ARMR collects and stores biological specimens from each patient to help better understand the genetic factors that influence the expression of migraine and the potential for developing complications, as well as facilitate the discovery of blood biomarkers that will aid in the diagnosis and identification of new treatments. It also collects clinical information over time, including an electronic diary that allows patients and their providers to track their progress in real time, and it provides researchers with insight into how migraine affects patients’ daily lives.
ARMR also leverages machine learning. “Advanced analyses of ARMR data will allow for the discovery of important information that couldn’t have otherwise been detected with simple analytical tools,” said Dr. Todd Schwedt, the co-director of ARMR.
AMF and ZS’s partnership has yielded additional innovations that could be valuable to future registries. “We found new data sources and were able to streamline processes in order to drive efficiency and reduce redundancy,” Bance says. The partners have worked to better engage patients and keep them active in the registry longer by making the interface friendly and intuitive. They also have put effort into ensuring that researchers have access to real-time data. “On top of that, registries can be very large and very expensive, so we put an equal amount of effort into refining operational procedures and processes to create efficiencies,” Bance says. “You add all those things together, and this is a state-of-the-art registry. This is a registry of the future.”
The American Migraine Foundation (AMF) is a nonprofit organization dedicated to the advancement of research and awareness surrounding migraine, a disabling condition that affects more than 36 million men, women and children in the United States. AMF was founded in 2010 by the American Headache Society to provide access to information and resources for individuals with migraine as well as their family and friends.
Working alongside the American Headache Society, AMF’s mission is to mobilize a community for patient support and advocacy, as well as drive and support impactful research that translates into treatment advances for patients with migraine and other disabling diseases that cause severe head pain.
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