Using PCORnet to Expand the DS-DETERMINED Cohort Through Healthcare System Recruitment, Incorporating Electronic Health Records, and Assessing Self-Determination

Project Summary: This project seeks to support and enhance Down Syndrome research capabilities via the DS-DETERMINED registry by leveraging PCORnet, the National Patient-Centered Clinical Research Network. Since 2014, the Patient-Centered Research Institute’s investment in creating PCORnet has resulted in a diverse national network covering over 100 million lives: providing curated, electronic health record data and claims as real world evidence along with heighted patient/clinician/health system engagement across participating organizations. We will link PCORnet to DS-DETERMINED and test capability in three dimensions: 1) increasing DS-DETERMINED registry enrollment, 2) extract clinical observations, treatments, and outcomes from PCORnet for DS-DETERMINED patients, and 3) conducting cognitive assessment via DS-DETERMINED in the PCORnet population.

People with Down syndrome and intellectual and developmental disabilities experience poorer health-related quality of life than people without a disability. For people with Down syndrome, person factors, such as communication ability and social skills can also impact health in terms of access to quality health care, opportunities for social participation, and challenging behavior. Self-determination which is defined as people with disabilities engaging in goal-directed actions that enhance quality of life has been shown to be a critical factor in improving employment and health-related outcomes. Specifically, the relationship between sleep quality and cognition may play a significant role in community living and employment for adults with Down Syndrome. We will invite PCORnet DS-DETERMINED participants to complete the Self-Determination Inventory (SDI) and link SDI scoring of problem solving and goal setting cognitive deficits for Down Syndrome patients with Obstructive Sleep Apnea (OSA) diagnoses recorded in PCORnet.

This will be one of the first studies to robustly integrate data regarding the relationships between health and community participation for people with DS, which is made possible linking health data from registry participants in PCORnet using DS-DETERMINED and the Self-Determination Inventory (SDI) System Data Dashboard. The research will have far reaching implications for supports and services for people with DS and the influence of health on participation. The addition of self-determination will help researchers better tailor interventions to support specific aspects of cognition that interfere with health and participation outcomes and create a framework for exploring other associations by integrating data to inform intervention development and future clinical trials.

PI(s): John Colombo, KU, Evan Dean, KU Lemuel Russell Waitman, KUMC

Purpose: The purpose of this study is to link PCORnet to DS-DETERMINED and test capability in three dimensions: 1) increasing DS-DETERMINED registry enrollment, 2) extract clinical observations, treatments, and outcomes from PCORnet for DS-DETERMINED patients, and 3) conducting cognitive assessment via DS-DETERMINED in the PCORnet population.

Goal(s): The goal of this study is to robustly integrate data regarding the relationships between health and community participation for people with DS, which is made possible linking health data from registry participants in PCORnet using DS-DETERMINED and the Self-Determination Inventory (SDI) System Data Dashboard.

Study Design: Survey/Observational

PCORnet Partners: University of Iowa, University of Kansas Medical Center, Allina Health System, University of Pittsburg, Children’s Hospital of Philadelphia

PaTH Partners: University of Pittsburgh

Sponsor: NIH

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