LibGuides: CTSI Special Populations: Current Events

Asian American, Native Hawaiian, and Pacific Islander Heritage Month, 2023

A Conversation About Health Equity and Community-Based Research

This May, as we celebrate Asian American, Native Hawaiian, and Pacific Islander (AANHPI) Heritage Month, the FDA OMHHE invites you to view our latest Health Equity Lecture Series webinar featuring a conversation with Dr. Frankie Wong, Professor of Health Equity Research at Florida State University. Watch the recording of the webinar here

Register here for the webinar “Inclusion of People with Disabilities in Clinical Research: Accessibility by Design (AbD) in Clinical Research Toolkit” on May 4 from 11 AM – 12 PM ET.

National Academy of Sciences, New Release

2023

Using Population Descriptors in Genetics and Genomics Research: A New Framework for an Evolving Field

Genetic and genomic information has become far more accessible, and research using human genetic data has grown exponentially over the past decade. Genetics and genomics research is now being conducted by a wide range of investigators across disciplines, who often use population descriptors inconsistently and/or inappropriately to capture the complex patterns of continuous human genetic variation.

Rare Disease Endpoint Advancement Pilot Program Workshop: Novel Endpoints for Rare Disease Drug Development

NEW VIRTUAL EVENT

Rare Disease Endpoint Advancement Pilot Program Workshop: Novel Endpoints for Rare Disease Drug Development

June 7, 2023

1:00 - 5:00 PM ET

June 8, 2023

1:00 - 5:00 PM ET

Virtually via Zoom

Register to Attend Virtually

Although rare disease is defined as a condition affecting fewer than 200,000 individuals, collectively they impact an estimated 30 million people in the U.S. Significant unmet treatment needs remain for many of those living with one of the 7,000-10,000 known rare diseases. In order to facilitate rare disease drug development, and as part of a performance goal and requirement related to the FDA User Fee Reauthorization Act of 2022 and the Food and Drug Omnibus Reform Act of 2022, respectively, the U.S. Food and Drug Administration (FDA) has established a pilot program for supporting the development of efficacy endpoints for rare disease treatments. The new Rare Disease Endpoint Advancement (RDEA) Pilot Program offers additional engagement opportunities with the FDA to sponsors of rare disease development programs that meet specific criteria.

On June 7 & 8, 2023, the Duke-Margolis Center for Health Policy, under a cooperative agreement with the FDA, will host an event, "Rare Disease Endpoint Advancement Pilot Program Workshop: Novel Endpoints for Rare Disease Drug Development." This event will illustrate challenges and opportunities in rare disease endpoint development, introduce stakeholders to the RDEA Pilot Program, and highlight how RDEA is structured to support sponsors who may encounter challenges with endpoint development.

A recording of this event will be available on the event webpage shortly after the event. Workshop materials will also be added to this webpage as they become available. Please use the link below to learn more about this event and to register.

Learn More & Register Here

Contact margolisevents@duke.edu with inquiries regarding this workshop.

Visit our events page to view other upcoming events hosted by the Duke-Robert J. Margolis, MD, Center for Health Policy.

Connect with us!

Special Populations and COVID-19

Black medical leaders: Coronavirus magnifies inequities, with deadly consequences
Describes the disparities in African American COVID-19 deaths, largely a result of longstanding determinants of health inequities including housing, diet, and health care access. These social determinants result in higher rates of chronic illness among African Americans, making them more susceptible to mortality from COVID-19. This article highlights the importance of collecting demographic data on virus spread and mortality and engaging African Americans in research.
Advanced Center for COVID-19 Related Disparities
ACCORD is the result of efforts by the University of North Carolina Board of Governors’ Historically Minority Serving Institutions (HMSI) Committee. It is supported by the North Carolina Policy Collaboratory at the University of North Carolina at Chapel Hill, with funding from the North Carolina Coronavirus Relief Fund established and appropriated by the North Carolina General Assembly.
NIH Releases CEAL Toolkit
The NIH Community Engagement Alliance (CEAL) Against COVID-19 Disparities focuses on addressing misinformation around COVID-19, engaging trusted partners and messengers in the delivery of accurate information, and educating communities on the importance of inclusion in clinical research to overcome COVID-19. The CEAL toolkit, which is distributed monthly, includes infographics, videos, social media messages, and key digital links that people can share with their communities to help keep them informed.
What the Racial Data Show
Highlights how important data is to understand how the virus is impacting vulnerable populations. COVID-19 data reveals that African Americans are being hospitalized and dying at disproportionate rates. This article also discusses the unique challenges undocumented Latino Americans may be facing during the pandemic.
How Racial Health Disparities Will Play Out in the Pandemic
Dr. Blackstock discusses the biased criteria for initial testing and the experience of denying patients medical tests. Explains how the federal response, social determinants of health, and structural racism create conditions in which COVID-19 is more dangerous among African Americans.
COVID-19 Is Not An Equalizer: Early Data Shows African Americans Are Dying at Higher Rates
Discusses how early data is showing people of color dying of COVID-19 at disproportionate rates. Explores the role of racial bias in severe shortages of medical equipment and staff.
The Racial Time Bomb in the Covid-19 Crisis - Charles Blow
Highlights how African Americans are disproportionately impacted by chronic health conditions, resulting in higher rates of COVID-19 mortality. The article compares the coronavirus to the H.I.V./AIDS crisis, which continues to ravage African American communities in the South.
COVID-19 Guidance for Older Adults
Individuals who are 65 years old or older are more likely to have serious COVID-19 illness. This CDC resource provides guidance for combating COVID-19 in the elderly population.
Rural America Could Be the Region Hardest Hit by the COVID-19 Outbreak
Health experts state rural areas have fewer medical facilities and hospitals compared to suburban areas. As a result, rural areas are among the hardest hit regions to COVID-19 due to high rates of older adults and limited resources. Please read how the COVID-19 outbreak is affecting rural America.
Webinar: Pursuing Data on COVID-19: The Health Inequity Matter
"As we learn more about COVID-19, the information about the pandemic we receive is fluid. Most recently, there have been some limited data regarding the disproportionate burden of the pandemic on communities of color. This is of course a major concern for all who are focused on achieving health equity"
Promoting Children's Health During COVID-19
The National Institute for Children's Health Quality shares resources for promoting children's health during the COVID-19 pandemic, including resources for children with sickle cell disease, telehealth resources, and systems change solutions.

Translational Science Case Study: Determinants of Pain in Sickle Cell Disease

Duke CTSI announces the publication of a new case study, "Biopsychosocial Determinants of Pain in Sickle Cell Disease," a research study led by Dr. Mitchell Knisely of the Duke University School of Nursing.

This case study discusses not only the methods and results of the research, but explores the challenges the researchers faced and the strategies they employed to overcome those challenges. It also clearly demonstrates the benefits to patients and society of this translational science project.

Here is the Knisely Case Study using the Translational Science Benefits Model.

Funding Opportunities

GMaP Region 1-South Stimulus Awards
The purpose of the Region 1-South Stimulus Awards is to support a range of cancer research development activities, from the purchase of research-related resources and conduct of pilot research studies to attending virtual trainings and workshops. Applications are strongly encouraged from cancer investigators at all stages in development who are underrepresented in the biomedical sciences according to NIH guidelines for underrepresented populations or researchers who conduct cancer disparities research.

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CTSI Special Populations: Current Events