The Headache Research Priorities initiative seeks to set an agenda for the next decade of headache research. It’s now time for the entire headache community to weigh in on the effort.
It’s not often that an opportunity arises for scientists, clinicians, and other interested individuals to shape the future of a field of research. But this is exactly the prospect in front of those who care about understanding and treating headache.
That’s because of Headache Research Priorities, an effort organized and led by the American Headache Society (AHS) and National Institute of Neurological Disorders and Stroke (NINDS). An international group of diverse stakeholders – researchers, doctors, patient advocates, and others – is coming together for this initiative to set an agenda for the next 10 years of research in the headache field.
And now it’s time for the wider community to weigh in on the fruits of the work accomplished thus far: A set of draft research priorities that have been made available for a public comment period running through the end of this July.
The history, structure, goals, and research priorities of the initiative were presented in a plenary session that kicked off the AHS 65th Annual Scientific Meeting, which took place June 15-18, 2023, in Austin, Texas. The session presenters included Todd Schwedt, Mayo Clinic, Phoenix, US; Amynah Pradhan, Washington University in St. Louis, US; Peter Goadsby, King’s College London, UK, and University of California, Los Angeles, US; and Michael Oshinsky and Rachel Weinberg, both of NINDS, which is part of the National Institutes of Health (NIH), Bethesda, US.
Taking a cue from other fields
The impetus for Headache Research Priorities, according to Michael Oshinsky, director of the NINDS Office of Preclinical Pain Research, who spoke to Migraine Science Collaborative prior to the AHS meeting, came from several headache groups who spoke with Walter Koroshetz, the director of NINDS, a few years ago.
Those groups pointed to NINDS’s commitment to support similar initiatives in other fields like epilepsy and stroke, Oshinsky said. But such undertakings had been initiated by people in those fields, not by NINDS, which instead can play a different role by providing an online platform to facilitate informative discussions about what the researchers, clinicians, and other stakeholders hope to achieve. Those interested in headache therefore decided to seize the opportunity.
“We were very happy to hear that the [headache community] wanted to partner with NINDS, to take the expertise and experience that an organization like NIH has in coordinating research communities and providing platforms for collaboration and discussion with the software tools that we have,” Oshinsky said.
The thinking behind Headache Research Priorities, according to Amynah Pradhan, who along with Todd Schwedt represents the AHS Research Committee on the Headache Research Priorities Organizing Committee, was that “it is really important for us to go through this exercise and really pinpoint the research strategies that we can, as a community, agree upon. We can publish the priorities and be able to refer to them on a regular basis when we apply for grants or when we write papers,” she told Migraine Science Collaborative in an interview before the meeting.
Schwedt told the listening audience at the AHS conference in Austin that simply developing the priorities would tell the field a lot. “This has been a great learning process for all those involved,” he said.
Schwedt also emphasized that it is not the intention of Headache Research Priorities to directly result in new funding opportunities. Rather, echoing Pradhan, investigators embarking on new research could cite the priorities in their grant proposals to any potential funders or in their manuscript submissions to journals and show how their work helps to fulfill the priorities.
A multi-stakeholder initiative
Meanwhile, Peter Goadsby, a past president of AHS, told the audience at the AHS meeting why the society was interested in Headache Research Priorities in the first place.
“The first thing to say is, I’m not satisfied with the way we manage people with headache disorders. Is anyone in the room absolutely satisfied with it? No, you’re not. Are you satisfied that you have all [the treatments]? You’re not. Are our patients satisfied by what’s going on? Of course they’re not.” There has been a lot of progress in the field, he added, but “we have a long way to go…. If we don’t bring together these research priorities and coalesce the stakeholders – and that’s all of you, that’s patients as much as all of us – we will miss an opportunity, and we will be guilty for that.”
But, while AHS, working with NINDS, would take the lead on the effort, the goal was always to include multiple stakeholders, not only in the US but internationally as well. Thus, Headache Research Priorities also sought representation from the International Headache Society (IHS), whose president, Cristina Tassorelli, serves as an executive co-sponsor (along with Goadsby), as well as representation from the research, clinical, patient advocate, nonprofit, and industry communities.
“The window is now”
At the start of the Headache Research Priorities, the Organizing Committee settled upon eight different research areas that would be the focus of working groups charged with developing the priorities. Those areas include animal models of headache, human models of headache, pathophysiology, optimizing headache diagnosis and management, treatment options for migraine and other headaches, headache medicine inequities and disparities, research workforce development, and quality of life. Then, in December 2021, the working groups started on their task.
Each working group has already developed several research priorities, along with short-term (3-5 years) and long-term (6-10 years) milestones on the way to fulfilling them. The priorities are now posted on NIH’s IdeaScale website, the platform being used to facilitate the initiative.
With the posting on IdeaScale of the draft priorities, Headache Research Priorities has moved to a new – and crucial – phase of development: It’s time for the broader community of people interested in headache to share their comments on the priorities and offer their own ideas, which the working groups will then consider as they develop the final versions of the priorities.
“What we really want is to have national and international buy-in from as many stakeholders as we can get,” Pradhan told Migraine Science Collaborative.
The public comment period is open through July 31, 2023. Then, the plan, Pradhan said at the AHS meeting, is to once again present the Headache Research Priorities, this time at the IHS 2023 International Headache Congress, which takes place September 14-17 in Seoul, South Korea.
That will be followed by a second public comment period through the end of November, 2023, with publication and dissemination of the final results in the spring of 2024. Once the priorities are finished, the goal will be to disseminate the findings, through manuscripts and white papers, for example, and post on a wide range of websites. The plan is to disseminate both scientific and plain language versions of the priorities.
But for now, the first public comment period is ending soon, so Oshinsky is urging everyone who wants to mold what headache research will look like in the future to act immediately by going to IdeaScale and submitting their comments and ideas.
“The window is now,” he told Migraine Science Collaborative.
Neil Andrews is a science journalist and executive editor of the Migraine Science Collaborative. Follow him on Twitter @NeilAndrews
To learn more about the Headache Research Priorities initiative, visit here.
To submit your ideas and feedback on the draft research priorities, visit here.
Learn more about the research areas:
Research Area 1: Animal Models of Headache
Refine, develop, and validate animal models for headache disorders.
Research Area 2: Human Models of Headache
Develop and use human models of headache to enhance understanding of mechanisms involved in headache disorders.
Research Area 3: Pathophysiology
Determine the underlying physiological processes associated with migraine and other headache chronification.
Research Area 4: Optimizing Headache Diagnosis and Management
Research to improve the personalized approach to headache diagnosis and treatment.
Research Area 5: Treatment Options for Migraine and Other Headaches
Identification and development of new treatments, treatment paradigms, and measures of treatment response.
Research Area 6: Headache Medicine Inequities and Disparities
Identify disparities in headache health, care, and research, reasons for these disparities, and interventions to eliminate them.
Research Area 7: Research Workforce Development
Workforce development is key to the success of headache research and to increase researchers in the field.
Research Area 8: Quality of Life
Foundational science that discovers what quality of life is in relationship to headache diseases and how to best measure it.
This work is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.
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