Crnic Institute Receives $2.7 Million Grant for an International Study of Down Syndrome

The Landmark NIH Grant Will Fund a Network of Clinical Research Sites Across Latin America to Harmonize Data and Understand Clinical Characteristics and Potential Differences in Care

AURORA, Colo. November 26, 2024 – A landmark $2.7 million grant from the National Institutes of Health (NIH) INCLUDE Project will support the Human Trisome Project – Latin America Network, a network of research and medical care sites across the United States and in Latin America to investigate the clinical characteristics and to identify distinguishing health issues or treatments for Latinos with Down syndrome. According to the U.S. Census Bureau’s American Community Survey, Hispanic and Latino Americans make up 19.1% of the U.S. population and are the nation’s fastest-growing ethnic group.

This innovative study will be led by scientists at the Linda Crnic Institute for Down Syndrome at the University of Colorado Anschutz Medical Campus and collaborators at Colorado State University. It is part of a larger effort launched by NIH INCLUDE Project known as the Down Syndrome Cohort Development Program (DS-CDP) that aims to study people with Down syndrome from birth to adulthood with unprecedented detail.

“We are thrilled that the NIH selected the Human Trisome Project to develop an international component for their INCLUDE Project,” says Joaquín Espinosa, PhD, executive director of the Crnic Institute and lead principal investigator. “Although Latinos are the fastest growing segment of the population with Down syndrome in the U.S., little is known about the potential differences in their developmental and clinical profiles. With this generous grant we will complete a comprehensive annotation of demographic information, social determinants of health, co-occurring conditions, and lifestyle factors.”

In the first two years of the study, multiple sites across the U.S. and Latin America will develop a shared protocol, including clinical characterization and collection of biospecimens, with the recruitment slated to begin in 2025. The Latin American network builds on the Human Trisome Project, a large cohort study of people with Down syndrome led by the Crnic Institute. The initiative will establish primary sites in the U.S., Mexico, Colombia, Brazil, Argentina, and Chile, while conducting feasibility studies in Venezuela and Bolivia.

“Our research protocol will be deployed in multiple languages and with appropriate cultural adaptations,” explains Deborah Fidler, PhD, professor of human development and family studies at Colorado State University and principal investigator of the study. “We are eager to learn about the lives of people with Down syndrome in Latin American countries, and we believe these discoveries will lead to new insights about promoting well-being in this population across cultural contexts.”

Researchers at each Latin American site will use a common protocol to assess how variations in race and ethnicity, geography, dietary habits, socio-economic status, and cultural factors influence the developmental and clinical features of Down syndrome.

“Latinos are not a monolithic group, and Latin America is undoubtedly one of the most diverse geographical areas in the world,” says Angela Rachubinski, PhD, assistant research professor of pediatrics and principal investigator of the study. “By comparing Latinos in the U.S. to those in various Latin American countries, we hope to identify risk and resiliency factors that could change the presentation of Down syndrome.”

“We are so grateful to the brilliant scientists at the Crnic Institute, for acting globally and ensuring diversity in our research efforts,” says Michelle Sie Whitten, President & CEO of Global Down Syndrome Foundation, a partner and an Affiliate organization of the Crnic Institute. “We are proud that GLOBAL’s advocacy work with Congress and with the NIH has led to the establishment of the trans-NIH Down syndrome funding program, the INCLUDE Project, that underwrites this and numerous other groundbreaking studies and clinical trials.”

This study will be supported by the Eunice Kennedy Shriver National Institute of Child Health & Human Development of the National Institutes of Health under Award Number U01HD116469. The content of this press release is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health

About the Linda Crnic Institute for Down Syndrome 

The Linda Crnic Institute for Down Syndrome is one of the only academic research centers fully devoted to improving the lives of people with Down syndrome through advanced biomedical research, spanning from basic science to translational and clinical investigations. Founded through the generous support and partnership of the Global Down Syndrome Foundation, the Anna and John J. Sie Foundation, and the University of Colorado, the Crnic Institute supports a thriving Down syndrome research program involving over 50 research teams across four campuses on the Colorado Front Range. To learn more, visit www.crnicinstitute.org or follow us on Facebook and Twitter @CrnicInstitute. 

About the University of Colorado Anschutz Medical Campus

The University of Colorado Anschutz Medical Campus is a world-class medical destination at the forefront of transformative science, medicine, education and patient care. The campus encompasses the University of Colorado health professional schools, more than 60 centers and institutes, and two nationally ranked independent hospitals – UCHealth University of Colorado Hospital and Children’s Hospital Colorado – which see more than 2 million adult and pediatric patient visits yearly. Innovative, interconnected and highly collaborative, the University of Colorado Anschutz Medical Campus delivers life-changing treatments, patient care and professional training and conducts world-renowned research fueled by $705 million in research grants. For more information, visit www.cuanschutz.edu.

About Colorado State University

Colorado State University, one of the nation’s top-performing public research institutions, has more than 33,000 students. Founded in 1870 as Colorado’s land-grant institution, CSU is renowned for its world-class faculty and research and academic programs in infectious disease, atmospheric science, clean energy technologies, human and animal health, environmental science, global business and more. CSU graduates on average carry less student debt and are employed at higher rates than their peers nationwide.

About Global Down Syndrome Foundation 

The Global Down Syndrome Foundation (GLOBAL) is the largest non-profit in the U.S. working to save lives and dramatically improve health outcomes for people with Down syndrome. GLOBAL established the first Down syndrome research institute and supports over 400 scientists and over 2,500 patients with Down syndrome from 33 states and 10 countries. Working closely with Congress and the National Institutes of Health, GLOBAL is the lead advocacy organization in the U.S. for Down syndrome research and care. GLOBAL has a membership of over 100 Down syndrome organizations worldwide, and is part of a network of Affiliates – the Crnic Institute for Down Syndrome, the Sie Center for Down Syndrome, the University of Colorado Alzheimer’s and Cognition Center – all on the Anschutz Medical Campus, and the GLOBAL Adult Down Syndrome Clinic at Denver Health. GLOBAL’s widely circulated medical publications include Global Medical Care Guidelines for Adults with Down Syndrome, Prenatal & Newborn Down Syndrome Information, and the award-winning magazine Down Syndrome World TM. GLOBAL also organizes the annual AcceptAbility Gala in Washington DC, and the annual Be Beautiful Be Yourself Fashion Show, the largest Down syndrome fundraiser in the world. Visit globaldownsyndrome.org and follow us on social media Facebook, X, Instagram, and LinkedIn.

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