Setting a National Agenda for Surgical Disparities Research: Recommendations From the National Institutes of Health and American College of Surgeons Summit.

Health care disparities (differential access, care, and outcomes owing to factors such as race/ethnicity) are widely established. Compared with other groups, African American individuals have an increased mortality risk across multiple surgical procedures. Gender, sexual orientation, age, and geographic disparities are also well documented. Further research is needed to mitigate these inequities. To do so, the American College of Surgeons and the National Institutes of Health-National Institute of Minority Health and Disparities convened a research summit to develop a national surgical disparities research agenda and funding priorities. Sixty leading researchers and clinicians gathered in May 2015 for a 2-day summit. First, literature on surgical disparities was presented within 5 themes: (1) clinician, (2) patient, (3) systemic/access, (4) clinical quality, and (5) postoperative care and rehabilitation-related factors. These themes were identified via an exhaustive preconference literature review and guided the summit and its interactive consensus-building exercises. After individual thematic presentations, attendees contributed research priorities for each theme. Suggestions were collated, refined, and prioritized during the latter half of the summit. Breakout sessions yielded 3 to 5 top research priorities by theme. Overall priorities, regardless of theme, included improving patient-clinician communication, fostering engagement and community outreach by using technology, improving care at facilities with a higher proportion of minority patients, evaluating the longer-term effect of acute intervention and rehabilitation support, and improving patient centeredness by identifying expectations for recovery. The National Institutes of Health and American College of Surgeons Summit on Surgical Disparities Research succeeded in identifying a comprehensive research agenda. Future research and funding priorities should prioritize patients' care perspectives, workforce diversification and training, and systematic evaluation of health technologies to reduce surgical disparities.

DS-Connect: A Promising Tool to Improve Lives and Engage Down Syndrome Communities Worldwide.

Down syndrome (DS) is the most common genetic cause of intellectual and developmental disabilities in the United States with an estimated birth prevalence of 1:691 births; however, worldwide estimates of the number of individuals with intellectual and developmental disabilities, including DS, remain speculative. Little is known about the global health impact of DS, such as heart defects, gastrointestinal malformations, and other medical and behavioral issues. Further research is needed to develop the next generation of novel therapies and compounds aimed at improving cognition, reducing dementia, and mitigating other manifestations of DS. To address these challenges, the National Institutes of Health has created the first web-based, voluntary registry and data resource called DS-Connect: The Down Syndrome Registry to collect demographic and health information about individuals with DS.

Down syndrome: national conference on patient registries, research databases, and biobanks.

A December 2010 meeting, "Down Syndrome: National Conference on Patient Registries, Research Databases, and Biobanks," was jointly sponsored by the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) at the National Institutes of Health (NIH) in Bethesda, MD, and the Global Down Syndrome Foundation (GDSF)/Linda Crnic Institute for Down Syndrome based in Denver, CO. Approximately 70 attendees and organizers from various advocacy groups, federal agencies (Centers for Disease Control and Prevention, and various NIH Institutes, Centers, and Offices), members of industry, clinicians, and researchers from various academic institutions were greeted by Drs. Yvonne Maddox, Deputy Director of NICHD, and Edward McCabe, Executive Director of the Linda Crnic Institute for Down Syndrome. They charged the participants to focus on the separate issues of contact registries, research databases, and biobanks through both podium presentations and breakout session discussions. Among the breakout groups for each of the major sessions, participants were asked to generate responses to questions posed by the organizers concerning these three research resources as they related to Down syndrome and then to report back to the group at large with a summary of their discussions. This report represents a synthesis of the discussions and suggested approaches formulated by the group as a whole.

Keeping clinicians in clinical research: the Clinical Research/Reproductive Scientist Training Program.

In recent years the need for translational and clinical research has increased, whereas the number of physicians involved in clinical research has diminished. There is clearly a need for formalized academic training in the quantitative and methodologic principles of clinical research in reproductive medicine. The Clinical Research/Reproductive Scientist Training Program (CREST), a program supported by the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD), the Clinical Research Training Program (CRTP) at Duke University, and the American Society for Reproductive Medicine (ASRM), meets this existing need. In addition, this program is specifically designed for physicians in private or academic clinical practice in reproductive medicine. Innovative programs such as CREST encourage the practicing physician to engage in clinical research while maintaining an active role in clinical practice. Participants in the program receive didactic on-line training from the CRTP and attend intensive weekend seminars at the National Institutes of Health (NIH) as well as CREST seminars at the annual meeting of the ASRM. Successful participants in the program receive a Certificate in Clinical Research from the CRTP. The program's goal is to provide practicing physicians with the tools and research credentials that will facilitate collaborations with investigators involved in large clinical trials.

Health disparities and women's reproductive health.

The National Institute of Child Health and Human Development (NICHD) is the institute within the National Institutes of Health that has played a great role in the conduct and support of research in women's reproductive health. In this position, the NICHD is advancing the health and well-being of women and girls in many areas, including research on uterine fibroids, birth outcomes, and community interventions that can improve health. This paper provides a general overview of the NICHD-sponsored women's reproductive health research portfolio, with emphasis on the challenges associated with eliminating racial/ethnic disparities in leiomyomata uteri and infant mortality. In addition, opportunities for community partnerships in reducing health disparities are described.