Abstract
This study is a cooperative investigation funded by the NIH. The project is a collaboration
among three major NIH Clinical Translational Science Awardees: 1) UCI (lead site with its
affiliate CHOC), 2) Northwestern University (with its affiliate Lurie Children's Hospital),
and 3) USC (with its affiliate Children's Hospital of Los Angeles).
There is an increasing number of children who, through medical advances, now survive diseases
and conditions that were once fatal, but which remain chronic and debilitating. A major
challenge to improve both the immediate and long term care and health of such children has
been the gap in our understanding of how to assess the biological effects of exercise. Like
otherwise healthy children, children with chronic diseases and disabilities want to be
physically active. The challenge is to determine what constitutes safe and beneficial level
of physical activity when the underlying disease or condition [e.g., cystic fibrosis (CF) or
sickle cell disease (SCD)] imposes physiological constraints on exercise that are not present
in otherwise healthy children. Current exercise testing protocols were based on studies of
athletes and high performing healthy individuals and were designed to test limits of
performance at very high-intensity, unphysiological, maximal effort. These approaches are not
optimal for children and adolescents with disease and disability. This project
(REACH-Revamping Exercise Assessment in Child Health) is designed to address this gap.
Cohorts of children will be identified with two major genetic diseases (CF and SCD) and
measure exercise responses annually as they progress from early puberty to mid or late
puberty over a 3-4year period. In addition, in the light of the pandemic, a group of children
will be added who were affected by SARS-CoV-2 and investigate their responses to exercise.
SARS-CoV-2 has similar long-term symptoms than CF and SCD have. Novel approaches to assessing
physiological responses to exercise using advanced data analytics will be examined in
relation to metrics of habitual physical activity, circulating biomarkers of inflammation and
growth, leukocyte gene expression, and the impact of the underlying CF, SCD or SARS-CoV-2
condition. The data from this study will help to develop a toolkit of innovative metrics for
exercise testing that will be made available to the research and clinical community.
