Rebecca Kush on Moving into the Future – New Dimensions and Strategies for Women’s Health Research for the National Institutes of Health

Last week, I had the opportunity to attend a very interesting meeting that I hope will provide a productive path for the future of clinical research and standards to support this work in the NIH Office of Research in Women’s Health (ORWH).  Sue Dubman of Genzyme, one of our CDISC Board members, encouraged me to attend “Moving into the Future – New Dimensions and Strategies for Women’s Health Research for the National Institutes of Health” on behalf of CDISC.  This was a Public Hearing and Scientific Workshop, which included public testimony and breakout groups around particular topic areas to gather input into the NIH ORWH; it is one of three such meetings and the only one to include a breakout group on technology and standards.  Sue Dubman and Dr. Laura Esserman of UCSF led this breakout group, which generated recommendations, including some encouraging expansion in the area of standards development and adoption/implementation for clinical research in this area.
In addition to very interesting discussions around IT and standards to support research in the future and the importance of linking these efforts with strategic plans for healthcare IT and healthcare-related standards, the presentations and testimonies were excellent.  In particular, there was a presentation by Dr. Elizabeth Blackburn, Professor of Biology and Physiology, UCSF on Telomeres and Aging.  If you are not aware of this work, I would encourage all of you who want to keep long telomeres (associated with a longer lifespan) to reduce stress and read a bit about this exciting work.  Another excellent presentation was “Why so Slow: The Advancement of Women in Science and Medicine” by Dr. Virginia Valian, Distinguished Professor from Hunter College and CUNY Graduate Center.
The ORWH is actually an office within the NIH and not an individual center. It focuses on ensuring that women are adequately represented as subjects across research studies and as scientists within research-related activities, and that specific health issues related to women (e.g. pregnancy and diseases that affect women disproportionately) are adequately addressed through research.
Other NIH areas where CDISC is collaborating, CDISC standards are being used, and/or  discussions are taking place regarding use of the CDISC standards include the NIH/National Cancer Institute, NIAID (National Institute of Allergy and Infectious Disease) Department of AIDS, NHLBI (National Heart Lung and Blood Institute), Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD), and the NIH Office of the Director through representation on the BRIDG Board.