Study Title:

• Using PCORnet and Referral Code Linkage to Expand the NIH DS-Connect Registry and Assess Down Syndrome Participants’ Self-Determination

Principal Investigators:

• John Colombo, University of Kansas
• Evan Dean, University of Kansas
• Lemuel Russell Waitman, University of Kansas Medical Center

Description:

• “This project seeks to support and enhance Down Syndrome research capabilities via the DS-CONNECT 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…”

Scope:
The data types included in the MVP release includes the following:

• Participants
• Conditions

Data types out of scope for the MVP release includes:

• Cognitive