Table of Contents
CPRN Community Advisory Committee Meetings
CPRN Data Transfer Specification
CPRN Investigator Committee Meeting Minutes
CPRN Mission, Vision and Strategic Plan
CPRN Pediatric Patient Reported Outcomes Study Group
CPRN Registry Elements
CPRN Registry IRB Protocol
CPRN Registry REDCap Forms
CPRN Standard Operating Procedures
CPRN Community Advisory Committee Meetings
| Date | Playback |
|---|---|
| February 13, 2019 | Meeting Webinar |
| March 29, 2018 | Meeting Webinar |
| September 19, 2017 | Meeting Webinar |
CPRN Data Transfer Specification
The CPRN Data Transfer Specification details how sites can transfer registry data from their site to the Data Coordinating Center at the University of Utah. This page provides links to several subdocuments that provide specifications on how to implement registry transfer to CPRN.
CPRN Data Transfer Specification
CPRN Mission, Vision and Strategic Plan
CPRN Mission, Vision and Strategic Plan
CPRN Registry Elements
CPRN Registry IRB Protocol
CPRN Registry IRB Protocol
The CPRN Registry IRB Protocol requires the submission of an approval letter from Nationwide Children’s Hospital. To request this letter, please email paul@cprn.org to indicate your intention to submit the CPRN Registry IRB Protocol at your institution.
CPRN Investigator Committee Meeting Minutes
CPRN Pediatric Patient Reported Outcomes Study Group
| Date | Title and Notes | Playback |
|---|---|---|
| December 19, 2016 | CPRN Pediatric PRO Study Group Meeting #2 | Download Meeting Recording December 19, 2016–MP3 |
| November 28, 2016 | CPRN Pediatric PRO Study Group Meeting #1 | Download Meeting Recording November 28, 2016–MP3 |
CPRN Registry REDCap Forms (Draft)
| Form name | File name | Description |
|---|---|---|
| Complete form package | CPRN-Registry-REDCap-Forms | All forms except patient reported outcome measures |
| 3D Gait Analysis | 3DGaitAnalysis_CPRegistryCommo | Common fields for 3D Gait Analysis |
| Baclofen Pump Surgery | BaclofenPumpSurgery_CPRegistry | Intra-operative information for Baclofen Pump Surgery |
| Basic Information | BasicInformation_CPRegistryCom | Basic Patient Information |
| Birth History | BirthHistory_CPRegistryCommonD | Details of patient birth complications |
| Clinical Findings | ClinicalFindings_CPRegistryCom | Scales from clinical examination |
| Demographics | Demographics_CPRegistryCommonD | Patient Demographics |
| Medical History | MedicalHistory_CPRegistryCommo | Medical History of CP and Co-morbidities |
| Neurosurgery | Neurosurgery_CPRegistryCommonD | Overview elements for CP neurosurgeries |
| Neurosurgery Post Op | NeurosurgeryPostOp_CPRegistryC | Post Operative information for CP related neurosurgeries |
| Orthopedic Lower Extremity Interventions | OrthopedicLowerExtremityInterv | Intra-operative information for orthopedic surgeries |
| Orthopedic Physical Examination | OrthopedicPhysicalExamination_ | Elements specific to orthopedic examination |
| Orthopedic Radiographs | OrthopedicRadiographs_CPRegist | Key elements from orthopedic requested radiographs |
| Patient Consent | PatientConsent_CPRegistryCommo | Information about patient consent |
| Patient Reported Medical History | PatientReportedMedicalHistory_ | Questions about recent patient therapies |
| Post Operative Clinic | PostOpClinic_CPRegistryCommonD | Elements common to neurosurgical post operative procedures |
| Physical and Occupational Therapy | PTOT_CPRegistryCommonDataEleme | PT / OT assessments of gait, ROM, etc. |
| Selective Dorsal Rhizotomy Surgery | SDRSurgery_CPRegistryCommonDat | Intra-operative elements for SDR surgery |
Note:It is important to note that the REDCap forms have a significant amount of programming logic to present fields conditionally based on the prior answers. PDF versions of the forms are static and hence expanded to reveal all possible fields. The size of any given form in this format is not indicative of the effort required to fill out the form by a provider.
