Cerebral Palsy Research Network Resources

Table of Contents

CPRN Community Advisory Committee Meetings
CPRN Investigator Committee Meeting Minutes
CPRN Mission, Vision and Strategic Plan
CPRN Pediatric Patient Reported Outcomes Study Group
CPRN Registry Common Data Model
CPRN Registry IRB Protocol
CPRN Registry REDCap Forms
CPRN Standard Operating Procedures


CPRN Community Advisory Committee Meetings

Date Playback
September 19, 2017 Meeting Webinar

CPRN Mission, Vision and Strategic Plan

CPRN Mission, Vision and Strategic Plan

CPRN Registry Common Data Model

CPRN Registry Common Data Model Spreadsheet
CPRN Surgical Data Elements (REDCap Data Dictionary)

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

Date Title and Notes Playback
September 13, 2017 This meeting only has a recording for playback. CPRN Investigators Mtg at AACPDM
August 22, 2017 CPRN Investigator Meeting #26 Download Meeting Recording August 22, 2017–MP3
July 18, 2017 CPRN Investigator Meeting #25 Download Meeting Recording July 18, 2017–MP3
May 1, 2017 CPRN Investigator Meeting #22 Download Meeting Recording May 1, 2017–MP3
April 18, 2017 CPRN Investigator Meeting #21 Download Meeting Recording April 18, 2017–MP3
March 21, 2017 The content of this meeting was confidential. You may request this recording from paul@cprn.net
March 6, 2017 CPRN Investigator Meeting #19 Download Meeting Recording March 6, 2017–MP3
February 6, 2017 CPRN Investigator Meeting #18 Download Meeting Recording February 6, 2017–MP3
January 17, 2017 CPRN Investigator Meeting #17 Download Meeting Recording January 17, 2017–MP3
December 5, 2016 CPRN Investigator Meeting #16 Download Meeting Recording December 5, 2016–MP3
November 7, 2016 CPRN Investigator Meeting #15 Download Meeting Recording November 7, 2016–MP3
October 3, 2016 CPRN Investigator Meeting #14 Download Meeting Recording October 3, 2016–MP3
September 23, 2016 CPRN Investigator Meeting #13 at AACPDM (slides) Download Meeting Recording September 23, 2016–MP3
August 29, 2016 CPRN Investigator Meeting #12 Download Meeting Recording August 29, 2016–MP3
August 10, 2016 CPRN Investigator and Patient Stakeholder Partners Meeting #12 Download Meeting Recording August 10, 2016–MP3
August 1, 2016 CPRN Investigator Meeting #11 Download Meeting Recording August 1, 2016–MP3
July 5, 2016 CPRN Investigator Meeting #10 Download Meeting Recording July 5, 2016–MP3
June 21, 2016 CPRN Investigator Meeting #9 Download Meeting Recording June 21, 2016–MP3
June 15, 2016 CPRN UVA PCORI Site Selection and Application Kickoff Meeting Download Meeting Recording June 15, 2016–MP3
June 6, 2016 Investigator Meeting #8 This call was not recorded.
May 24, 2016 Investigator Meeting #7Site Survey
Orthopedic Intervention List
Download Meeting Recording May 24, 2016–MP3
May 9, 2016 Investigator Meeting #6 This call contained confidential information from Epic and cannot be shared at this time.
April 26, 2016 Investigator Meeting #5 Download Meeting Recording April 26, 2016–MP3
April 11, 2016 Investigator Meeting #4 Download Meeting Recording April 11, 2016–MP3
March 29, 2016 Investigator Meeting #3 Download Meeting Recording March 29, 2016–MP3
March 14, 2016 Investigator Meeting #2 Download Meeting Recording March 14, 2016–MP3
February 22, 2016 Investigator Kickoff Meeting Download Monday Kickoff Meeting –MP3
Download Tuesday Kickoff Meeting — MP3

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.

CPRN Standard Operating Procedures (SOPs)

CPRN Standard Operating Procedures V1.1