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Patient Registry: A Really Big Deal for Migraine Research

The newly launched American Registry for Migraine Research will store clinical, biological, genetic, and imaging data and samples from people with migraine (who give their consent to have their information stored). Researchers will be able to investigate the biology, genetics, and treatment of migraine will have access to the information and blood, saliva, and spinal fluid samples—and even brain tissue from deceased patients—to find the causes of and improve treatment for migraine.

The registry is a really big deal because it will amass a vast collection of data that will allow for the first large-scale, long-term studies on migraine. It’s exactly the kind of project we need to “transform migraine research and lead to substantial treatment breakthroughs” in migraine treatment, said American Migraine Foundation chair and headache specialist David Dodick, MD. (It also captures exactly how I feel about the registry’s possibilities.)

This isn’t just rhetoric. Similar databases and repositories have been instrumental in advancing research and treatment for many other neurological diseases. In only a decade, the Alzheimer’s Disease Neuroimaging Initiative provided data for more than 350 published scientific papers. By enabling researchers around the world to collaborate, the initiative has established early detection methods, created standard clinical tests, and led to major genetic discoveries about Alzheimer’s. In other words, it has provided significant contributions toward the detection and treatment of the disease. And the migraine registry could allow for similar progress.

I’m generally optimistic about the future of migraine research and treatment, but nothing has excited me as much as the patient registry. Researchers have made encouraging progress in recent years. With the registry, the rate of impressive discoveries is likely to increase exponentially.

Funded by the 36 Million Migraine campaign, the registry was officially launched at the American Headache Society’s conference in November. Development of a portal where patients can register their own information is underway—we’ll let you know as soon as it’s available. In the meantime, you can learn more about the American Registry for Migraine Research on the American Migraine Foundation’s website.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.


  • painfree
    3 years ago

    You are absolutely right about the importance of a national migraine registry. In fact, it makes me wonder why the NIH hasn’t done it, similar to what they did with their “exceptional responders initiative” for cancer, which I mentioned here already. The significance was demonstrated already, by a website called, which accumulated a similar range of data from over 6,000 migraineurs. They posted statistics which showed the effectiveness of hundreds of migraine treatments, indicating that eight of the top ten were simply lifestyle changes, like sleep, and the other two, Imitrex and Maxalt were about equal, which Consumer Reports also reported.
    Unfortunately, the site has disappeared, following its acquisition by genome site, which was acquired by Google Almighty. It now appears that you can only access this crowd-sourced data if you submit your own data to 23andme. This could be risky, as explained in a Scientific American editorial titled, “23andme is Terrifying …” It seems like all this makes a NIH-controlled migraine registry absolutely crucial.

  • Nancy Harris Bonk moderator
    3 years ago

    This is great news, Kerrie. Thank you for sharing it with us.


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