Predictors of mortality and of healthy survival in a large community-based prospective cohort of aging adults with Down syndrome - Project Summary
Adults with Down syndrome live longer than ever before, however their life expectancy is still shorter than in
the general population. The most common causes of death are respiratory failure, dementia and
cardiovascular disease. Although the most prevalent causes of mortality have been identified, modifiable
predictors of mortality are still unknown. Additionally, a more inclusive evaluation of cardiovascular risk factors
and their specific predictive value for mortality will help us better understand their cardiovascular risk profile.
Lastly, defining a group of “healthy survivors” allows us to take a ‘positive biology’ approach and determine the
predictors for aging without many of the diseases this population is experiencing. A better understanding of
non-modifiable and modifiable risk factors (such as health behaviors) is critical to further combat early mortality
by developing lifestyle-related prevention programs, early detection, screening and diagnosing strategies, and
adequate allocation of health care resources.
We propose to leverage our experience and expertise with the population-based, prospective,
longitudinal cohort study Healthy Aging and Intellectual Disability (HA-ID) to uniquely contribute to the
understanding of predictors for mortality and “healthy survivors” in aging adults with Down syndrome. The HA-
ID dataset includes n=1050 aging adults with intellectual disabilities (ID) of ≥50 years including n=149 adults
with Down syndrome. The HA-ID dataset includes an extensive set of baseline health outcomes mostly
collected through clinical and in-person evaluation, including modifiable risk factors such as health behaviors.
Additionally, morbidity and mortality have been collected longitudinally 3 and 5 years after baseline, and the 10
year follow up data collection is currently being completed. Our long-term goal is to improve healthy aging for
adults with Down syndrome by identifying modifiable risk factors as targets for lifestyle-related prevention
strategies and early detection and diagnosis strategies. Therefore, the proposed aims of this study are:
Aim 1: Describe causes of mortality and survival rates in a community-based sample of aging adults with Down
syndrome and contrast with a matched sample of aging adults with ID without Down syndrome.
Aim 2: Identify modifiable and non-modifiable predictors of mortality (including a comprehensive cardiovascular
risk profile) in a community-based sample of aging adults with Down syndrome in the HA-ID study.
Aim 3: Identify the characteristics of ‘healthy survivors’ in aging adults with Down syndrome.
This project will identify targets for lifestyle-related strategies to support healthy aging in adults with Down
syndrome and for early detection and diagnosis strategies. These insights will provide directions for allocation
of health care resources, inform longitudinal studies on critical health measures to consider, and inspire
mechanistic questions for experimental studies on health in aging adults with Down syndrome. These
outcomes are in line with the ambitions stated in the NIH INCLUDE Down Syndrome Research Plan 2021.
