In May, 2010, the NIH held a planning workshop to develop strategies for headache research and to identify consensus areas for focused research. Now, 18 months later, the meeting proceedings and recommendations of the workshop have finally appeared in a report, “Opportunities and Priorities for Headache Research." A brief 2-page update attached to the report also details federal responses to date to the Workshop discussions and recommendations.
These responses include:
- NIH funding of a large comparative effectiveness clinical trial to study pediatric migraine preventative medications. This trial addresses a major problem never before studied. (It will be the topic of an upcoming full HeadNotes entry.)
- Sponsorship of five further meetings. Three workshops were devoted to pain conditions other than headache (chronic fatigue syndrome, TMJ, and vulvodynia). The fourth workshop, a 5-hour conference held last June 1st, was devoted to “Advancing Translational Headache Meeting”. The fifth workshop on grant opportunities and writing skills was also held in June at the American Headache Society Annual Meeting.
- Announcement of the FDA “Analgesic Clinical Trial Translations, Innovations, Opportunities, and Networks (ACTTION). This is a public-private partnership initiative to improve and expedite development of new analgesics.
- Announcement of the “NIH Pain Consortium Centers of Excellence in Pain Education.” This initiative is intended to develop curricular tools to facilitate pain education for health professionals at multiple levels of training.
- Announcement of an initiative to develop common data elements (CDEs) for standardization of data collection across clinical trials for headache disorders. This initiative is intended to permit greater ease of design, execution, and interpretation of clinical studies.
These initiatives and developments are very welcome and represent significant progress towards improving the context and environment for performing research.
However, what is still lacking is a commitment by NIH, aside from the pediatric trial, to increase funding of actual research on headache disorders. More than sufficient concrete suggestions are contained in the workshop report to form the bases for NIH programs that are critical to jump-starting headache research and training. Where are the specifically funded initiatives (e.g. Request for Applications, Program Announcements) to follow-through on the outcomes of the workshop? A tremendous amount must be done and too few resources are currently devoted to the effort.
Furthermore, why did it take 18 months to issue the brief report from the May 2010 Workshop? Nothing in its contents explains why it could not have been available more than a year ago. Equally puzzling, the June 1st translational research workshop was almost 6 months ago and no report is available for that workshop either. When the data for 2011 NIH funding are released in February of next year, we will see whether the actions and inactions of the past year have appreciably changed the level of research funding for migraine and headache disorders.
In the meantime, we need to keep our concerns directly before our elected officials who have oversight of NIH.
We are seeking a congressional hearing, the very first of its kind, to air publically the facts about headache disorders, including their resultant disability, stigma, suffering, inadequate therapies, and federal neglect. We are asking you to sign a national on-line petition at this time.
We will present the signed petition to members of Congresss to urge them to hold such a hearing. Please sign the petition and ask everyone and anyone you know that cares about someone suffering with a disabling headache disorder to sign as well. Only with your help can we expect to have a congressional hearing scheduled and have the current state of inadequate research publically recognized and addressed.
Thank you very much in advance,
President, Alliance for Headache Disorders Advocacy