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Full-Text Articles in Family Medicine
Prevalence Of Mental Health Conditions Among 6078 Individuals With Down Syndrome In The United States, Anne Rivelli, Veronica Fitzpatrick, Sagar Chaudhari, Laura Chicoine, Gengjie Jia, Andrey Rzhetsky, Brian Chicoine
Prevalence Of Mental Health Conditions Among 6078 Individuals With Down Syndrome In The United States, Anne Rivelli, Veronica Fitzpatrick, Sagar Chaudhari, Laura Chicoine, Gengjie Jia, Andrey Rzhetsky, Brian Chicoine
Journal of Patient-Centered Research and Reviews
Findings from a recent study of the largest documented cohort of individuals with Down syndrome (DS) in the United States described prevalence of common disease conditions and strongly suggested significant disparity in mental health conditions among these individuals as compared with age- and sex-matched individuals without DS. The retrospective, descriptive study reported herein is a follow-up to document prevalence of 58 mental health conditions across 28 years of data from 6078 individuals with DS and 30,326 age- and sex-matched controls. Patient data were abstracted from electronic medical records within a large integrated health system. In general, individuals with DS had …
Assessment Of Stakeholder Engagement In A Down Syndrome Research Study, Jeanhee Chung, Ashwini Sarathy, Yichuan Grace Hsieh, Greg Estey, Amy Torres, Vasiliki Patsiogiannis, Karen Donelan, Brian G. Skotko
Assessment Of Stakeholder Engagement In A Down Syndrome Research Study, Jeanhee Chung, Ashwini Sarathy, Yichuan Grace Hsieh, Greg Estey, Amy Torres, Vasiliki Patsiogiannis, Karen Donelan, Brian G. Skotko
Journal of Patient-Centered Research and Reviews
There is growing recognition of the importance of engaging patients early in the design of research studies. For studies involving patients with intellectual and cognitive disabilities, researchers may consider engaging with family caregivers, health professionals, community advocates, and/or subject matter experts to provide a more multifaceted, surrogate perspective. Evaluating the engagement of these stakeholder groups in research is nascent, and tools are limited. Research studies involving these individuals provide the opportunity to test new methods of measurement of stakeholder engagement in research. We conducted a 3-year research study implementing and evaluating Down Syndrome Clinic to You, an online platform for …
Challenges Of Pediatric Disease In Adulthood, Dennis J. Baumgardner, Brian Chicoine
Challenges Of Pediatric Disease In Adulthood, Dennis J. Baumgardner, Brian Chicoine
Journal of Patient-Centered Research and Reviews
Some chronic diseases — such as the rare bone disease X-linked hypophosphatemia, the impetus for a study reported within Volume 7, Issue 2 of the Journal of Patient-Centered Research and Reviews — are diagnosed in childhood but become more symptomatic in adulthood. In this editorial, the challenges, pitfalls, and opportunities regarding the care of adults with childhood-onset chronic diseases are examined using Down syndrome, cystic fibrosis, congenital heart disease, and Hirschsprung disease as examples.