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