Clinical committee: Adult subcommittee

The Committee for Clinical Research is led by Dr. Alberto Costa (Case Western Reserve University School of Medicine). The committee is a platform to encourage the development, discussion, and dissemination of clinical research efforts across the T21 research community, families of individuals with Down syndrome and self-advocates, and clinicians serving patients with Down syndrome. One of our main focuses is on enabling opportunities for collaboration in large scale cohort studies of health issues in Down syndrome as well as clinical trials of treatment options. We are particularly keen on improving standardization of cognitive tests and protocols and agreeing on a minimum dataset for future studies, and plan to produce relevant research guidelines. The goal is to help produce a minimum degree of harmonization of procedures and assessments used in clinical studies, while allowing for a reasonable degree of customization and encouraging innovation. This work will hopefully be of equal benefit to research participants with Down syndrome and the research community.

Aims

The goal of the adult subcommittee of the T21RS Clinical Committee is to increase our knowledge of the range of cognitive and behavioral profiles of adults with Down syndrome (DS) and to deepen our understanding of the effect of various comorbid disorders on the quality of life of those with Down syndrome and their families.

Activities

Cognitive test batteries – downloads

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Events

Preconference meeting (3rd International T21RS Conference)

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Publications

2020

Down syndrome review in Nature Reviews disease primer

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2019

A systematic review of general and functional ability assessments in Down syndrome

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Perspectives on ethnic and racial disparities in Alzheimer's disease, including in Down syndrome

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2017

Sindrome de Down: Neurobiologia, Neuropsicologia, Salud mental.

Editor: Jesus Florez, Beatriz Garvia, Roser Fernandez-Olaria in Ciencias de la EducacionPreescolar y Especial.

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