Publications by authors named "E B Rubenstein"

Down syndrome (DS) or trisomy 21 (T21) is present in a significant number of children and adults around the world and is associated with cognitive and medical challenges. Through research, the T21 Research Society (T21RS), established in 2014, unites a worldwide community dedicated to understanding the impact of T21 on biological systems and improving the quality of life of people with DS across the lifespan. T21RS hosts an international conference every two years to support collaboration, dissemination, and information sharing for this goal.

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Background: At least half of children and adults with Down syndrome have a major mental health concern during their life but few studies ask people with Down syndrome directly about their experience. We used a co-research model to explore anxiety, stress, and coping in adults with Down syndrome.

Methods: Our group of researchers and adults with Down syndrome conducted an online survey on mental health for adults with Down syndrome.

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  • The study investigates how social identity and systems of power influence health outcomes for adults of color with Down syndrome, highlighting disparities in mortality and hospitalization.
  • Analysis included data from over 119,000 adults with Down syndrome and 3.2 million without, focusing on age-adjusted rates within various racial-ethnic groups over a period from 2011 to 2019.
  • Findings reveal that while mortality rates are similar across racial groups with Down syndrome, marginalized groups experience significantly higher hospitalization rates, indicating poorer health and healthcare access.
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  • * A total of 132,720 adults were analyzed, revealing that 23.3% had been diagnosed with Alzheimer dementia, with an incidence rate of 22.4 cases per 1,000 person-years.
  • * The average age at which individuals were first diagnosed with Alzheimer dementia was approximately 54.5 years, with the mean age at death for these patients being around 59.2 years.
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  • Mpox, a disease first reported in France in May 2022, led to a recommendation for live Modified Vaccinia Ankara (MVA-BN) vaccination for multiple-partner men who have sex with men (MSM) starting July 11, 2022.
  • A study analyzed the changes in sexual behaviors of MSM on HIV pre-exposure prophylaxis (PrEP) and assessed the effects of vaccination on mpox incidence, revealing significant behavioral shifts and a substantial decrease in infection rates post-vaccination.
  • The results showed a notable drop in mpox incidence from 67.4 to 24.4 cases per 1000 person-months after the vaccination roll-out, indicating a 99% risk reduction
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