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The NIH INCLUDE Project, and an update on the NIDCD’s September advisory council meeting

Child with Down syndrome using a tablet.

October 6, 2022

The NIH INCLUDE Project (INvestigation of Co-occurring conditions across the Lifespan to Understand Down syndromE) aims to address critical health and quality-of-life needs of people with Down syndrome. Individuals with Down syndrome can face significant health challenges, including hearing problems and difficulty with speech and language. In this director’s message, I describe this important NIH program, which offers opportunities for support for the NIDCD research community. I also provide a brief summary of topics discussed at our most recent National Deafness and Other Communication Disorders (NDCD) Advisory Council Meeting in September.

The NIH INCLUDE Project: Advancing research on Down syndrome

People with Down syndrome, the most common genetic cause of intellectual disability, have a unique mix of risk and resilience factors for common diseases. The syndrome is associated with high rates of hearing loss (up to 75% of people with Down syndrome have hearing loss), eye abnormalities, congenital heart defects, and other health concerns, but solid tumors, atherosclerosis, and myocardial infarction are rare. Recognizing the need for more research to understand the basis for the health challenges faced by individuals with Down syndrome, NIH formed a public-private Down syndrome consortium in 2011, and published an updated Down syndrome research plan in 2014.

The NIH INCLUDE Project launched in 2018 in response to a Congressional directive calling for an NIH-wide initiative aimed at producing scientific discoveries to improve the health and development of people with Down syndrome while also learning more about common conditions shared with the broader population. This additional funding gave NIH the opportunity to build an integrated effort across NIH’s institutes and centers.

The initiative offers researchers in NIDCD scientific areas the opportunity to explore factors that contribute to hearing loss and communication problems in Down syndrome. Since the program’s launch, we’ve seen a growing response from the NIDCD research community, and we are beginning to see accelerated scientific progress that could potentially be transformative for those with Down syndrome and their families. For example, Brian Skotko, M.D., M.P.P., and Christopher J. Hartnick, M.D., M.S., of the Massachusetts General Hospital, and their colleagues found evidence of cognitive and language improvements from hypoglossal nerve stimulation in children and adolescents with Down syndrome. Dr. Skotko discussed these findings at NIDCD’s advisory council meeting in September (see below for link to videocast recording).

Research funding from the INCLUDE Project is available through a broad range of mechanisms, from administrative supplements to large, multi-center collaborative grants. The initiative also supports trainees, including predoctoral candidates and postdoctoral fellows. Approximately $75 million was allocated for fiscal year 2022. I encourage you to apply for funding if your interests fall within the project’s scope. For more information, visit the frequently asked questions page. If you need additional guidance specific to NIDCD mission areas, contact Kelly King, Au.D., Ph.D., a program director at the NIDCD who is our representative on the INCLUDE Project.

National Deafness and Other Communication Disorders Advisory Council Meeting, September 8-9

On September 8-9, the institute’s advisory council convened virtually. Portions of our council meetings are open to the public, and I invite you to watch the archived videocasts of the open sessions (September 8 and September 9) and to join us online for our next meeting, to be held February 2-3, 2023. A few highlights from September’s meeting are summarized below.

  • I announced the selection of Cendrine D. Robinson, Ph.D., M.P.H., as the institute’s first chief diversity officer. Dr. Robinson previously served as a scientific program officer and Diversity, Equity, and Inclusion (DEI) chair at the Department of Veterans Affairs. We are thrilled to have Dr. Robinson with us to plan and lead a robust plan to expand diversity, equity, inclusion, and accessibility within NIDCD’s workforce. To view this segment, start at the 16 minute mark of the September 8 videocast.
  • I also reported on the landmark Food and Drug Administration (FDA) rule on over-the-counter hearing aids, highlighting the decades of NIDCD research that culminated in this new regulation. The groundbreaking rule, effective mid-October 2022, will enable hearing aids to be sold directly to consumers, expanding access to high-quality, affordable hearing aids for the millions of Americans with hearing loss. To view this segment, start at the 32 minute mark of the September 8 videocast.
  • Melissa A. Parisi, M.D., Ph.D., chief of the Intellectual and Developmental Disabilities Branch at the Eunice Kennedy Shriver National Institute of Child Health and Human Development, provided an overview of the NIH INCLUDE Project, which aims to harness NIH resources to improve the health of people with Down syndrome. Brian Skotko, M.D., M.P.P., of the Massachusetts General Hospital, then described his INCLUDE-supported study of the impact of hypoglossal nerve stimulation on sleep apnea, cognition, and expressive language in children and adolescents with Down syndrome. To view these segments, start at the 41 minute and 1 hour 6 minute marks of the September 8 videocast.
  • The Virtual NIH Grants Conference & PreCon Events began with a series of monthly events in August 2022 and will culminate in an online 2-day conference in February 2023. The conference gives extramural researchers a chance to meet with NIH experts to share knowledge, guidance, perspectives, and resources on the NIH grants process and policies. Rebecca A. Wagenaar-Miller, Ph.D., director of the NIDCD Division of Extramural Activities, invited attendees to register for the events and the conference and to stop by the virtual NIDCD booth. Dr. Wagenaar-Miller also touched on the institute’s efforts to diversify NIDCD grant review panels, and encouraged individuals interested in serving on such a panel to self-nominate. To view this segment, start at the 1 hour 52 minute mark of the September 8 videocast.
  • Damage to hair cells is a major cause of age-related hearing loss. This has spurred great interest in the potential of hair cell regeneration for restoring auditory function. Matthew W. Kelley, Ph.D., chief of the NIDCD Laboratory of Cochlear Development, described research from his lab and others on the genetic and epigenetic underpinnings of the hair cell developmental program. The findings represent a step toward a regenerative solution to reversing hearing loss. To view this segment, start at the 27 minute mark of the September 9 videocast.
  • By recruiting one million or more participants from across the United States, the NIH All of Us Research Program aims to build one of the most diverse health databases in history. Geoffrey Ginsburg, M.D., Ph.D., All of Us chief medical and scientific officer, gave an overview of the program and highlighted opportunities for scientists in NIDCD research areas to leverage its infrastructure and participant cohort for generating new insights. To view this segment, start at the 1 hour 27 minute mark of the September 9 videocast.
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