Defining new therapeutic targets and developing new therapies are among the goals of the 2016–2020 ACR National Research Agenda. So, too, is understanding early disease states, defining triggers of autoimmunity and examining disparities in access to medication and treatment.1
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Charting a Course
Every five years, the Committee on Research (COR) is tasked with helping chart the ACR’s course for research initiatives, funding and advocacy efforts. The most recent agenda, published this year, relied heavily on input from patients, physicians and stakeholders.
“By soliciting input from the rheumatology community broadly defined, we can identify the most needed and impactful areas for research,” says COR Chair S. Louis Bridges Jr., MD, PhD, Anna Lois Waters Professor of Medicine at the University of Alabama at Birmingham (UAB). He is also director of the UAB Division of Clinical Immunology and Rheumatology. “The research agenda was largely [developed via] feedback from the ACR and ARHP membership.”
In April 2015, the COR, under the leadership of Alexis Ogdie-Beatty, MD, MSCE, of the University of Pennsylvania Division of Rheumatology and chair of the Early Career Investigator Subcommittee of the COR, administered a survey to ACR and ARHP members, asking them to list “the five most important research questions that need to be addressed over the next five years in order to improve the care for patients with rheumatic disease.”
In June 2015, the COR carefully selected 100 female and male participants from all career stages and regions of the country, including patients, academic and community clinicians, researchers, allied health professionals, and pediatric and adult rheumatologists, in order to prioritize themes that emerged from the survey.
The goal, the COR writes in the Agenda, was to “focus on important questions facing patients with rheumatic diseases, rheumatologists caring for these patients, and the relevant stakeholders.”
The COR presented a draft agenda at the Rheumatology Leadership Summit in June 2015 and solicited feedback from stakeholders, such as the Arthritis Foundation and the National Institutes of Health. In August 2015, the COR returned to the same panel of participants from the June 2015 survey, plus 17 additional physicians, to finalize the agenda.
Among the feedback the COR received, Dr. Bridges says, was the suggestion to seek “better ways to more rationally choose among [the] many therapies available for rheumatoid arthritis.” The agenda, he adds, “is not to be used as a blueprint for funding, but rather [as a means] to provide information that may help the organization and other funding agencies prioritize areas.”
Key Agenda Themes
The overall themes that emerged in the 2016–2020 ACR National Research Agenda include the need to:
- Define new therapeutic targets and therapies (including regenerative medicine);
- Improve understanding of existing therapies (including predictors of response or adverse events, and the role of non-pharmacologic therapy);
- Foster a better understanding of the etiology, pathogenesis and genetic basis of rheumatic diseases; pain and fatigue; co-morbidities; and the influence of aging;
- Improve outcome measures, including patient-reported outcome measures and imaging modalities;
- Explore the role of the changing healthcare landscape in the U.S. for patients, rheumatologists and rheumatology health professionals; and
- Better engage patients in their own care.
- American College of Rheumatology National Research Agenda 2016–2020. 2016 Apr. http://www.rheumatology.org/Portals/0/Files/ACR-Research-Agenda-2016-2020.pdf.
Kelly April Tyrrell writes about health, science and health policy. She lives in Madison, Wis.