Families and self-advocates play a powerful role in shaping science. This session will explore how your voices and experiences are helping researchers better understand Alzheimer’s disease in adults with Down syndrome (DS). An NIH representative will introduce the INCLUDE (INvestigation of Co-occurring conditions across the Lifespan to Understand Down syndromE) Project, a national initiative studying co-occurring conditions that affect people with DS and the general population such as Alzheimer’s disease, diabetes, autism, autoimmune conditions, and congenital heart disease. By learning more about these co-occurring conditions and how they intersect, researchers aim to improve health outcomes and quality of life for individuals with DS throughout adulthood and aging.
A cornerstone of this effort is the ABC-DS (Alzheimer’s Biomarker Consortium – Down Syndrome) Program. To date ABC-DS has recruited and is following more than 450 adults with DS across the United States. Its crucial mission is to spot the early signs of Alzheimer’s disease in adults with DS by identifying sensitive measures of cognitive change, using blood-based proteins, metabolites, genetic biomarkers, neuroimaging, and brain features that may indicate the earliest states of the disease.
During this panel presentation, scientists will share the latest research insights on Alzheimer’s disease in DS, joined by a parent and her adult son with DS, who will offer their perspectives on participating in studies and the importance of family voices in shaping research.
Together, families and researchers are building a bridge between lived experiences and science, in order to advance knowledge, develop earlier interventions, and promote healthier futures for adults with DS.