Report highlights need for office to support autoimmune disease research at NIH institutes

Although the quantity and quality of research conducted by the National Institutes of Health (NIH) on autoimmune diseases is impressive, a strategic plan and a well-funded office to support the coordination of all research on autoimmune diseases in NIH institutes and centers are needed, says a new report commissioned by the Congress of National Academies of Sciences, Engineering, and Medicine.

Improving NIH research on autoimmune diseases says that there are major impediments to the NIH’s ability to maximize the results of its research, such as the different approaches of the institutes’ and centers’ strategic plans regarding autoimmune diseases, and most importantly, the lack of a research plan that spans all institutes and centers to provide a comprehensive NIH strategy for autoimmune diseases. Without the latter, the NIH lacks a comprehensive, transparent, and strategic approach to how it plans and evaluates progress in autoimmune disease research.

The committee that wrote the report considered five options for improving research on autoimmune diseases and their expected outcomes, and concluded that the best option to address these challenges would be for the NIH Director to establish an office of research on autoimmune diseases. autoimmune diseases/autoimmunity within the office. of the director. Such an office would facilitate multidisciplinary collaboration between NIH and stimulate innovation around autoimmune disease research; participate in priority setting, strategic planning and implementation; budget and allocate available research funds in accordance with the strategic plan; work with institutes and centers to coordinate, manage, evaluate and report on research efforts; communicate with key stakeholders; and provide visible leadership in autoimmune disease research. The report recommends that the new office have its own research budget and substantially control some key budgetary decisions regarding autoimmune disease research activities across NIH in order to increase and strengthen research efforts. collaboration and to accelerate research.

“NIH research has contributed significantly to advances in autoimmune disease care, and it is important to continue to translate this knowledge into more accurate diagnostic criteria and clinical interventions to achieve the best outcomes and benefit life. of our patients,” said Bernard Rosof, professor, Donald and Barbara Zucker School of Medicine at Hofstra/Northwell, and chair of the committee. “Due to the number and complexity of autoimmune diseases, achieving this requires a concerted strategic effort that leverages the many research activities at NIH institutes and centers.”

Autoimmune diseases occur when the immune system, which normally defends the body against disease and infection, malfunctions and mistakenly attacks healthy cells, tissues and organs. These diseases are chronic, lifelong and can lead to significant physical and psychosocial impairments, hampering activities of daily living, productivity and quality of life. People with an autoimmune disease usually develop more than one autoimmune disease. Some can be fatal and there is no known cure.

There is no consensus on which diseases are autoimmune diseases; counts vary from over 80 to 150 illnesses depending on the source. The committee chose 11 autoimmune diseases for special attention: Sjögren’s disease, systemic lupus erythematosus, antiphospholipid syndrome, rheumatoid arthritis, psoriasis, inflammatory bowel disease (Crohn’s disease and ulcerative colitis ), celiac disease, primary biliary cholangitis, multiple sclerosis, type 1 diabetes, and autoimmune thyroid disease (Graves’ disease and Hashimoto’s thyroiditis). The commonalities between autoimmune diseases, such as mechanistic pathways, genetics, and the effects of environmental factors, can provide important information that can aid the development of patient care and therapies, and provide the greatest opportunity for advance the field, the report says.

There is a lack of long-term (20 years or more) population-based epidemiological studies of autoimmune diseases, the committee found. Such studies would, among other things, assess disease trends, risk factors and costs; identify differences between population subgroups; and determining the prevalence of understudied autoimmune diseases, such as celiac disease. The National Cancer Institute’s Surveillance, Epidemiology, and Endpoints (SEER) program, which provides information on cancer incidence and survival in the United States, is a model for such studies.

The report also includes recommendations for developing population cohorts for long-term (over 20 years) data collection that extends from the time before disease manifestation to the development of symptoms and disease, including patient cohorts that allow examination of disease progression, coexisting morbidities, and outcomes, as well as the timing of exposures that may contribute to disease.

In addition, the NIH should provide funding and support for a national research program which, among other priorities, should:

  • Dissect heterogeneity between and within autoimmune diseases to decipher common and disease-specific pathogenic mechanisms
  • Study rare autoimmune diseases and develop supportive animal models
  • Define autoantibodies and other biomarkers that can diagnose and predict autoimmune disease initiation and progression
  • Determine the biological functions of genetic variants and gene-environment interactions in and between autoimmune diseases using new cutting-edge technologies
  • Examine the role of environmental exposures and social determinants of health in autoimmune diseases across the lifespan
  • Determine the impact of coexisting morbidities, including concurrent autoimmune diseases and autoimmune disease complications, across the lifespan, and develop and evaluate interventions to improve patient outcomes
  • Foster research to advance health equity for all patients with autoimmune diseases

The study -; undertaken by the Committee for the Evaluation of NIH Research in Autoimmune Diseases -; was sponsored by the National Institutes of Health. The National Academies of Sciences, Engineering, and Medicine are private, not-for-profit institutions that provide independent, objective analysis and advice to the nation to solve complex problems and inform public policy decisions related to the science, technology and medicine. They operate under an 1863 congressional charter to the National Academy of Sciences, signed by President Lincoln.

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