Opportunities, barriers, and recommendations in Down syndrome research

JA Hendrix, A Amon, L Abbeduto… - … science of rare …, 2020 - content.iospress.com
BACKGROUND: Recent advances in medical care have increased life expectancy and
improved the quality of life for people with Down syndrome (DS). These advances are the …

Medical care of adults with Down syndrome: a clinical guideline

AY Tsou, P Bulova, G Capone, B Chicoine, B Gelaro… - Jama, 2020 - jamanetwork.com
Importance Down syndrome is the most common chromosomal condition, and average life
expectancy has increased substantially, from 25 years in 1983 to 60 years in 2020. Despite …

Setting a public health research agenda for Down syndrome: summary of a meeting sponsored by the Centers for Disease Control and Prevention and the National …

SA Rasmussen, N Whitehead… - American Journal of …, 2008 - Wiley Online Library
Abstract On November 8–9, 2007, a meeting entitled “Setting a Public Health Research
Agenda for Down Syndrome” was held to review current knowledge, identify gaps, and …

Down syndrome: national conference on patient registries, research databases, and biobanks

ML Oster-Granite, MA Parisi, L Abbeduto… - Molecular genetics and …, 2011 - Elsevier
A December 2010 meeting,“Down Syndrome: National Conference on Patient Registries,
Research Databases, and Biobanks,” was jointly sponsored by the Eunice Kennedy Shriver …

[HTML][HTML] Prevalence of common disease conditions in a large cohort of individuals with Down syndrome in the United States

B Chicoine, A Rivelli, V Fitzpatrick… - Journal of patient …, 2021 - ncbi.nlm.nih.gov
Purpose Given the current life expectancy and number of individuals living with Down
syndrome (DS), it is important to learn common occurrences of disease conditions across …

Co‐occurring medical conditions in adults with Down syndrome: A systematic review toward the development of health care guidelines. Part II

G Capone, M Stephens, S Santoro… - American Journal of …, 2020 - Wiley Online Library
Adults with Down syndrome (DS) represent a unique population who are in need of clinical
guidelines to address their medical care. Many of these conditions are of public health …

Conducting clinical trials in persons with Down syndrome: summary from the NIH INCLUDE Down syndrome clinical trials readiness working group

NT Baumer, ML Becker, GT Capone, K Egan… - Journal of …, 2022 - Springer
Abstract The recent National Institute of Health (NIH) INCLUDE (INvestigation of Co-
occurring conditions across the Lifespan to Understand Down syndromE) initiative has …

Co‐occurring medical conditions in adults with Down syndrome: A systematic review toward the development of health care guidelines

GT Capone, B Chicoine, P Bulova… - American Journal of …, 2018 - Wiley Online Library
Adults with Down syndrome (DS) represent a unique population who are in need of clinical
guidelines to address their medical care. The United States Preventive Service Task Force …

Family perspectives about Down syndrome

BG Skotko, SP Levine, EA Macklin… - American Journal of …, 2016 - Wiley Online Library
National medical organizations recommend that during prenatal counseling sessions,
healthcare providers discuss how having a child with Down syndrome (DS) might impact the …

Neurologic complications of Down syndrome: a systematic review

JD Santoro, D Pagarkar, DT Chu, M Rosso… - Journal of …, 2021 - Springer
Down syndrome (DS) is one of the most well-recognized genetic disorders. Persons with DS
are known to have a variety of co-morbid medical problems, affecting nearly all organ …