The CPRN Clinical Registry is implemented at sites using one of two methods:
  1. CPRN Data collection forms built into the Electronic Medical Records System (EMR) where data is collected as a standard part of clinical care by the provider, or
  2. Chart abstraction by clinical research assistant by reviewing the medical note in the EMR.

The table below provides the status of every site that has been invited to join the network. Data from the EMR is transferred to the registry database housed at the University of Utah. The columns below are in reverse chronological order, i.e., the right most column is the first step for a CPRN site to prepare the registry. Institutional Review Board (IRB) dates are based on the most recent renewal of the IRB protocol for the registry.

Symbol Meaning
Progress toward milestone
Not working
Not started

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Site Transferring Registry Data Enrolling Patients EMR Forms Ready Business Associates Agreement Signed Institutional Review Board Approval Letter of Agreement Signed
AI duPont Hospital for Children

February 20, 2018

Akron Children’s Hospital

February 10, 2020

Bethany Children’s Health Center

Boston Children’s Hospital

February 20, 2018

Children’s Hospital Colorado

September 28, 2017

Children’s Hospital of Philadelphia

Children’s Mercy Hospital

Children’s National September 5, 2023

Children’s of Alabama

October 9, 2017

Cincinnati Children’s Hospital

June 2, 2020

Columbia University Weinberg Center

Cook Children’s Hospital

Gillette Specialty Care

November 21, 2017

Johns Hopkins

Kennedy Krieger Institute

January 24, 2024

Le Bonheur Children’s Hospital / Campbell Foundation

January 19, 2023

Lurie Children’s Hospital of Chicago

Mayo Clinic

Mt. Washington Pediatric Hospital

Nationwide Children’s Hospital

February 20, 2019

Phoenix Children’s Hospital

March 9, 2018

Primary Children’s Hospital

December 4, 2016

Riley Children’s Hospital

October 31, 2022

Seattle Children’s Hospital

February 20, 2018

Shirley Ryan Ability Lab

February 10, 2020


St. Louis Children’s Hospital

Texas Children’s Hospital

UCSD / Rady Children’s Hospital

July 11, 2017

University of California — San Francisco (UCSF)

June 14, 2019

University of Michigan Medical Center

March 7, 2018

University of Oklahoma

University of Virginia

January 24, 2023

University of Wisconsin – Madison

UT Health — Houston

July 31, 2017