Assessment of Stakeholder Engagement in a Down Syndrome Research Study.

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.

A randomized controlled trial of an online health tool about Down syndrome.

Purpose: We sought to determine if a novel online health tool, called Down Syndrome Clinic to You (DSC2U), could improve adherence to national Down syndrome (DS) guidelines. We also sought to determine if primary care providers (PCPs) and caregivers are satisfied with this personalized online health tool.

Methods: In a national, randomized controlled trial of 230 caregivers who had children or dependents with DS without access to a DS specialist, 117 were randomized to receive DSC2U and 113 to receive usual care.

Efficacy of a clinical decision-support system in an HIV practice: a randomized trial.

Background: Data to support improved patient outcomes from clinical decision-support systems (CDSSs) are lacking in HIV care.

Objective: To test the efficacy of a CDSS in improving HIV outcomes in an outpatient clinic.

Design: Randomized, controlled trial.