The CPRN Clinical Registry is implemented at sites using one of two methods:
- 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
- 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 |
|---|---|
|
|
Ongoing |
|
|
Completed |
|
|
Progress toward milestone |
|
|
Not working |
|
|
Not started |
| 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 |
|
| Boston Children’s Hospital |
|
|
|
|
February 20, 2018 |
|
| Children’s Hospital Colorado |
|
|
|
|
September 28, 2017 |
|
| Children’s Mercy Hospital |
|
|
|
|
|
|
| Children’s of Alabama |
|
|
|
|
October 9, 2017 |
|
| Cincinnati Children’s Hopsital |
|
|
|
|
June 2, 2020 |
|
| Columbia University Weinberg Center |
|
|
|
|
|
|
| Gillette Specialty Care |
|
|
|
|
November 21, 2017 |
|
| Johns Hopkins |
|
|
|
|
|
|
| Kennedy Krieger Institute |
|
|
|
|
|
|
| Le Bonheur Children’s Hospital / Campbell Foundation |
|
|
|
|
|
|
| Lurie Children’s Hospital of Chicago |
|
|
|
|
|
|
| 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 |
|
|
|
|
April 27, 2018 |
|
| Seattle Children’s Hospital |
|
|
|
|
February 20, 2018 |
|
| Shirley Ryan Ability Lab |
|
|
|
|
February 10, 2020 |
|
| SickKids |
|
|
|
|
|
|
| St. Louis Children’s Hospital |
|
|
|
|
|
|
| Texas Children’s Hospital |
|
|
|
|
|
|
| UCSD / Rady Children’s Hospital |
|
|
|
|
July 11, 2017 |
|
| University of California — Los Angeles (UCLA) |
|
|
|
|
February 9, 2018 |
|
| University of California — San Francisco (UCSF) |
|
|
|
|
June 14, 2019 |
|
| University of Florida — Jacksonville |
|
|
|
|
February 27, 2018 |
|
| University of Michigan Medical Center |
|
|
|
|
March 7, 2018 |
|
| University of New Mexico |
|
|
|
|
|
|
| University of North Carolina — Chapel Hill |
|
|||||
| University of Oklahoma |
|
|
|
|
|
|
| University of Virginia |
|
|
|
|
March 31, 2017 |
|
| UT Health — Houston |
|
|
|
|
July 31, 2017 |
|
| Yale School of Medicine |
|
|
|
|
May 9, 2019 |
|
