NIA announces up to $5 million to study crucial link between Alzheimer’s and Down syndrome

The National Institutes of Health (NIH) provides first request for applications specific to Down syndrome–Alzheimer’s disease research — a major step toward addressing the lack of funding for Down syndrome research.

Two institutes under NIH, the National Institute on Aging (NIA) and the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) recently announced an ROI research grant opportunity called Biomarkers of Alzheimer’s Disease in Down Syndrome. The goal of this funding opportunity is to enable the identification of the longitudinal progression of Alzheimer’s disease in adults with Down syndrome using clinical, cognitive, imaging, genetic and biochemical biomarkers. The $5 million grant opportunity will fund either one or two grants exploring the connection between the two conditions. The application deadline is January 12, 2015.

Global’s advocacy helps pave the way

In 2006, the Global Down Syndrome Foundation discovered Down syndrome was the least funded genetic condition by the NIH despite being the most common such condition diagnosed in the United States.

To address this, Global worked with the NICHD and co-organized the National Conference on Patient Registries, Research Databases, and Biobanks in December 2010. NICHD continues to address the lack of funding for Down syndrome and has launched an important registry tool called DS-Connect: The Down Syndrome Registry.

In September 2012, Global and the Alzheimer’s Association organized the first-ever joint workshop bringing top scientists in the fields of Down syndrome and Alzheimer’s disease together. The workshop resulted in three significant milestones: the Down Syndrome–Alzheimer’s Disease Investigator Program which has provided $2 million in grant funding; the “Down Syndrome and Alzheimer’s Disease” Professional Interest Area at the Alzheimer’s Association that keeps research on the two conditions in the minds of decision-makers on funding; and a media spotlight on the relationship between the conditions.

Global’s advocacy efforts in Washington, D.C., has helped put Down syndrome and Alzheimer’s research at the fore. Just last month, Global arranged for Huntington Potter, Ph.D., Director of Alzheimer’s Disease Research at the Linda Crnic Institute for Down Syndrome on the Anschutz Medical Campus to address members of Congress about the importance of Down syndrome research and the potential it holds for treating or curing Alzheimer’s. Dr. Potter is the renowned scientist who discovered the mechanistic relationship between Down syndrome and Alzheimer’s, showing that Down syndrome and Alzheimer’s disease are “two sides of the same coin.”

Global’s collaboration with organizations such as the National Down Syndrome Congress, the National Down Syndrome Society, and the Alzheimer’s Association is driving the new emphasis on Down syndrome–Alzheimer’s research.

The importance of research

“Individuals with Down syndrome have been identified as high risk for developing Alzheimer’s disease,” said Melissa Parisi, M.D., Ph.D., NICHD Chief of the Intellectual and Developmental Disabilities Branch. “We want to know the biological indicators of Alzheimer’s in those with Down syndrome, as well as early signs that suggest the presence of Alzheimer’s disease so we can develop effective prevention and treatment.”

By age 40, almost all people with Down syndrome exhibit the hallmark amyloid plaques and tau tangles associated with Alzheimer’s, but only an estimated 50 percent of people with Down syndrome develop symptoms of dementia by age 50. Studying why this occurs could hold the key to finding a cure for Alzheimer’s.

At the NIA, the grants are part of the federal National Plan to Address Alzheimer’s Disease, which launched in 2012 with a goal of developing effective treatments for Alzheimer’s by 2025.

“The U.S. population as a whole is an aging society, and age is the biggest risk factor for Alzheimer’s disease,” said Laurie M. Ryan, Ph.D., NIA Chief of the Dementias of Aging Branch and Program Director of Alzheimer’s Disease Clinical Trials. “Additionally, people with Down syndrome are living longer lives and thus are becoming more affected by it.”

An estimated 5 million Americans age 65 and older are currently living with Alzheimer’s disease — and that number will only grow as baby boomers age.

Because adults with Down syndrome are at such a high risk for developing Alzheimer’s, studying how the disease develops in these individuals can provide a wealth of information.

“We want to learn as much as possible about Alzheimer’s,” Dr. Parisi said. “The partnerships formed between the community of scientific investigators, federal and private funders of research, and people with Down syndrome is incredibly important in advancing treatment options for everyone with Alzheimer’s disease.”

To learn more about or apply for the NIA/NICHD funding opportunity, click here. To take an active role in ongoing research, enroll in DS-Connect: The Down Syndrome Registry.

Watch Global’s tribute video to Senator Jerry Moran, spotlighting the importance of federal funding for Down syndrome-Alzheimer’s disease research:

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