- Down syndrome and intellectual disability research
- Chronic Disease Management Strategies
- Family and Disability Support Research
- Adolescent and Pediatric Healthcare
- Medical Coding and Health Information
- Frailty in Older Adults
- Kawasaki Disease and Coronary Complications
- Aging, Health, and Disability
- Immunodeficiency and Autoimmune Disorders
- Primary Care and Health Outcomes
- Dementia and Cognitive Impairment Research
- Global Cancer Incidence and Screening
- Inclusive Education and Diversity
- Social Sciences and Policies
- COVID-19 and healthcare impacts
- SARS-CoV-2 and COVID-19 Research
- Vaccine Coverage and Hesitancy
- Congenital Heart Disease Studies
- Autism Spectrum Disorder Research
- Genetics and Neurodevelopmental Disorders
- Health Systems, Economic Evaluations, Quality of Life
- Emergency and Acute Care Studies
- Attention Deficit Hyperactivity Disorder
- Intestinal Malrotation and Obstruction Disorders
- Delphi Technique in Research
Advocate Lutheran General Hospital
2001-2024
Advocate Health Care
2017-2023
Virginia Mason Medical Center
2022
Illinois College
2022
University of Illinois Chicago
1998-2022
Cincinnati Children's Hospital Medical Center
2022
University of Cincinnati Medical Center
2022
Rosalind Franklin University of Medicine and Science
2020
Cardiovascular disease is a leading cause of morbidity and mortality in individuals with Down syndrome. Congenital heart the most common cardiovascular condition this group, present up to 50% people syndrome contributing poor outcomes. Additional factors outcomes include pulmonary hypertension; coexistent pulmonary, endocrine, metabolic diseases; risk for atherosclerotic disease. Moreover, disparities care compared general population, which vary across different geographies health systems,...
Prevalence of overweight among the general population has been reported to be 33% for males and 36% females. We undertook this study establish prevalence data in a cohort with Down syndrome stratify incidence by living arrangement. measured Body Mass Index (BMI) 283 persons found higher group compared population. Individuals family setting had than did those home setting. Overweight should considered major public health concern that warrants further attention from researchers, practitioners,...
This report has been prepared by the Ageing Special Interest Research Group of International Association for Scientific Study Intellectual Disabilities (IASSID) in collaboration with Department Mental Health and Substance Dependence Programme on Health, World Organization (WHO), Geneva, Switzerland, all rights are reserved above mentioned organization. The document may, however, be freely reviewed, abstracted, reproduced or translated part, but not sale use conjunction commercial purposes....
BackgroundHealth conditions, immune dysfunction, and premature aging associated with trisomy 21 (Down syndrome, DS) may impact the clinical course of COVID-19.MethodsThe T21RS COVID-19 Initiative launched an international survey for clinicians or caregivers on patients DS. Data collected between April October 2020 (N=1046) were analysed compared UK ISARIC4C hospitalized without DS.FindingsThe mean age DS in was 29 years (SD = 18). Similar to general population, most frequent signs symptoms...
Recent advances in medical care have increased life expectancy and improved the quality of for people with Down syndrome (DS). These are result both pre-clinical clinical research but much about DS is still poorly understood. In 2020, NIH announced their plan to update requested input from scientific advocacy community.
Given the current life expectancy and number of individuals living with Down syndrome (DS), it is important to learn common occurrences disease conditions across developmental lifespan. This study analyzed data from a large cohort DS in an effort better understand these conditions, inform future screening practices, tailor medical care guidelines, improve utilization health resources.This retrospective, descriptive incorporated up 28 years data, compiled 6078 30,326 controls matched on age...
Objective To develop standardization for nomenclature, diagnostic work up and criteria cases of neurocognitive regression in Down syndrome. Background There are no consensus the evaluation or diagnosis persons with As such, previously published data on this condition is relegated to smaller case series heterogenous sets. Lack standardized assessment tools has slowed research clinical area. Methods The authors performed a two-round traditional Delphi method survey an international group...
Findings from a recent study of the largest documented cohort individuals with Down syndrome (DS) in United States described prevalence common disease conditions and strongly suggested significant disparity mental health among these as compared age- sex-matched without DS. The retrospective, descriptive reported herein is follow-up to document 58 across 28 years data 6078 DS 30,326 controls. Patient were abstracted electronic medical records within large integrated system. In general, had...
Prior authorization criteria for Federal Drug Administration (FDA) approved immunotherapeutics, among the class of anti-amyloid monoclonal antibodies (mAbs), established by state drug formulary committees, are tailored adults with late-onset Alzheimer's disease. This overlooks Down syndrome (DS), who often experience dementia at a younger age and different diagnostic assessment outcomes. exclusion may deny DS access to potential disease-modifying treatments. To address this issue, an...
Adults with Down Syndrome (DS) are at higher risk for severe outcomes of coronavirus disease 2019 (COVID-19) than the general population, but evidence is required to understand risks children DS, which necessary inform COVID-19 shielding advice and vaccination priorities. We aimed determine epidemiological clinical characteristics in DS. Using data from an international survey obtained a range countries control United States, we compared prevalence symptoms medical complications factors...
Findings from a recent study describing prevalence of common disease conditions in the largest documented cohort individuals with Down syndrome (DS) United States strongly suggested significant disparity endocrine disorders among these when compared age- and sex-matched without DS. This retrospective, descriptive is follow-up report documenting 21 disorder conditions, across 28 years data, 6078 DS 30,326 controls, abstracted electronic medical records within large integrated health system....
With improved healthcare, the Down syndrome (DS) population is both growing and aging rapidly. However, with longevity comes a very high risk of Alzheimer's disease (AD). The LIFE-DSR study (NCT04149197) longitudinal natural history recruiting 270 adults DS over age 25. designed to characterize trajectories change in DS-associated AD (DS-AD). current reports its cross-sectional analysis first 90 subjects enrolled. Plasma biomarkers phosphorylated tau protein (p-tau), neurofilament light...
Our goal in this study was to determine whether donepezil, an acetylcholinesterase inhibitor, would improve cognitive functioning 19 subjects with Down syndrome and no dementia. They were assigned either a donepezil or placebo group. Cognitive caregiver ratings measured at baseline, 4 weeks, 12 weeks. With the exception of one area (language), improvement noted any subtests, behavioral scores, ratings. Subjects group showed language scores compared The results suggest that may performance...
This study examined mammogram reports of women with Down syndrome (DS) treated in the largest medical facility specifically serving adults DS United States. Records 684 and results 993 mammograms were reviewed, including 902 screening 93 diagnostic mammograms. Only 2 (0.7%) had a diagnosis breast cancer. found low rate cancer among DS, finding which is consistent previous studies. The financial cost per was high, benefit questionable, potential for harm greater. With less than 1% this...
Individuals with Down syndrome (DS) are among the groups highest risk for severe COVID-19. Better understanding of efficacy and risks COVID-19 vaccines individuals DS may help improve uptake vaccination. The T21RS Initiative launched an international survey to obtain information on safety DS. De-identified data collected between March December 2021 were analyzed. Of 2172 DS, 1973 (91%) had received at least one vaccine dose (57% BNT162b2), 107 (5%) unvaccinated by choice, 92 (4%) other...
A case of a woman who is among the longest surviving people with Down syndrome was described. The life expectancy persons has increased more than six-fold to 56 years since turn century. literature regarding for reviewed, and implications Alzheimer's disease were discussed.