Plans for a national migraine registry

There are plans for a national migraine registry headed by the American Migraine Foundation.

The American Migraine Foundation has announced their proposal for the nation's first Migraine Patient Registry and Biorepository.

The database will house information on patients with migraine; samples of saliva, blood, and other genetic materials and biological fluids; and brain images, all of which can be used for migraine research.  

"The goal of the American Migraine Foundation is to develop a multicenter patient registry and biorepository that will transform migraine research and lead to substantial treatment breakthroughs," said David W. Dodick, MD, Foundation chair and professor, medicine, Mayo Clinic College of Medicine, Rochester, Minnesota, in a press release.

"We hope to be able to assemble a treasure trove of data that researchers can access to find powerful clues to migraine causes and treatments," he adds. "The data collected in the registry will also help treatment providers tailor existing therapies to specific types of migraine."

The American Migraine Foundation is a nonprofit foundation supported by the American Headache Society and donors. Its mission is to support innovative research that will lead to improvement in the lives of patients with migraine and other disabling headaches.

Treasure Trove

While statewide and nationwide patient databases exist for most neurologic diseases, including epilepsy, Parkinson's disease, amyotrophic lateral sclerosis, and Huntington's disease, this is the first for migraine.

Biorepositories for other neurologic disorders have been highly successful, the press release notes. For example, the Alzheimer's Disease Neuroimaging Initiative in 2004 has been used by almost 2500 researchers and resulted in the publication of more than 350 scientific papers. This database has led to the development of approaches for early detection and the creation of standardized methods for clinical tests, collaboration among researchers worldwide, and major discoveries in the genetics of the disease.

"Although progress has been made in understanding the characteristics of many primary headache disorders, large-scale, long-term studies are needed to better explain disease processes, genetic factors and indicators of the progression of disease," said Dr Dodick. "A combination patient registry and biorepository will make these studies possible."

Creation of this research resource is a major goal of the Foundation's 36 Million Migraine Campaign. According to the Foundation website, the purpose of this campaign is to put migraine front and center among national health priorities and to raise as much as $36 million to support medical research — one dollar for every American who struggles with migraine.

The 36 million Americans living with migraine exceed the number with asthma and diabetes combined.  An estimated 3 to 7 million Americans live with chronic migraine, which is especially disabling.

Migraine can be extremely costly, accounting for more than $20 billion annually in direct costs, such as doctor visits and medications, and indirect costs, including missed work and lost productivity, in the United States.

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