Pediatric Rheumatology Care and Outcomes
Improvement Network
JIA Collaborative
We are grateful for the support for this project from:
The Arthritis Foundation
Anonymous donors
American College of Rheumatology
The Cincinnati Children’s Hospital Research Foundation
The Pediatric Center for Education and Research in Therapeutics at Cincinnati Children’s Hospital
Medical Center, the Agency for Healthcare Research and Quality
Pfizer Independent Grant for Learning & Change
Version November 20, 2015
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Thank you for your interest in the Pediatric Rheumatology Care and Outcomes Improvement Network (PRCOIN). This application packet serves the purpose of enrollment in the PR-COIN juvenile idiopathic arthritis (JIA)
collaborative. Please make sure to return the application to the PR-COIN Coordinating Center once this
application is fully completed with signatures ([email protected]).
PR-COIN JIA Collaborative:
PR-COIN is a “Learning Network” of rheumatology care teams that conduct quality improvement projects
and share data to help deliver better clinical care, so as to improve outcomes. PR-COIN works as a network
to move research findings on new or better treatments more quickly to everyday use. The PR-COIN Steering
Committee is directing this project with quality improvement support and project coordination from the
James M. Anderson Center for Health Systems Excellence at Cincinnati Children's Hospital Medical Center
(CCHMC) in Cincinnati, Ohio, USA.
This application packet is to guide you in understanding our network and to facilitate preliminary activities
to become an active PR-COIN team. PLEASE NOTE –an important factor for success is the support of a
senior or executive leader in assuring your team has the resources and time to engage in improvement
activities and realize the full benefit of PR-COIN membership. Ideally your site will form an improvement
team that is representative of your clinic such, with members such as care providers (MD/DO/NPs),
nurses, PT/OT, SW, clinic staff, as well as coordinator time (consent, data entry).
 Please review this packet and the accompanying PR-COIN Charter that describes our Learning
Network with respect to the JIA Collaborative, goals, benefits, and requirements.
Submit the following to join PR-COINs JIA initiative:
 Intent to Apply Form (page 5)
 Site Application Form (page 6) within one month of submitting your intent including:
 Senior Leader Agreement
 Site Team Information
You will be notified via email of your application status.
Upon approval and admittance to PR-COIN, representatives will support your team in completing
these remaining required activities:
Submission of human subjects’ research protection regulatory documents (hereafter
referred to as IRB - . Institutional Review Board) as required by your local hospital or clinic.
To support your IRB application, teams will receive PR-COINs IRB protocol plus
recommended verbiage for parent consent and patient assent forms.
Submission of two data sharing legal agreements. PR-COIN partnered with the American
College of Rheumatology (ACR) to house team data in their Rheumatology Clinical Registry
(RCR). Accordingly, two legal agreements are required to enable data submission and
1) The “Registry Participation Agreement” with ACR must be completed so that your
team may submit data.
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2) A second legal form, the “Limited Data Use Agreement” with CCHMC, permits the
transfer of your team data from the registry (ACR RCR) to the PR-COIN Coordinating
Center for analysis.
Data collection cannot begin until both legal agreements and your IRB’s approval are
finalized so start this process early by introducing your legal and IRB experts to PRCOIN’s Coordinating Center personnel.
Participation Fee:
Please be advised PR-COIN’s annual membership fee is $10,000 covering July – June participation. The
fee is pro-rated based upon date of application.
Full payment of participation fee is required. Once payment is received, your team will have full
privileges e.g. access to team coaching, bi-annual learning sessions, monthly webinars, QI tools and
knowledge bank, newsletter, aggregate data and team specific data reports. Upon Research
Committee approval, your team may also conduct research using PR-COIN data sets.
Please direct all questions and correspondence to [email protected]
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PR-COIN JIA Collaborative Steering Committee Members
Esi Morgan DeWitt, MD, MSCE, Cincinnati Children’s Hospital Medical Center, Chair
C. April Bingham, MD, Penn State Milton S Hershey Children's Hospital
Beth Gottlieb, MD, MSc, Steven & Alexandra Cohen Children’s Medical Center of New York
Ronald Laxer, MDCM, FRCPC, Hospital for Sick Children, Toronto, Canada
Laura Noonan, MD Levine Children’s Hospital Charlotte NC
Laura Noonan, MD, Levine Children’s Hospital
Jon (Sandy) Burnham, MD, MSCE, The Children’s Hospital of Philadelphia
Judy Olson, MD, Children’s Hospital of Wisconsin
Karla Jones, CPNP-PC, Nationwide Hospital
Jennifer Weiss, MD, Hackensack University Medical Center
Vora Sheetal, MD, MSc, Levine Children’s Hospital
PR-COIN Coordinating Center
Based at the James M. Anderson Center for Health Systems Excellence at Cincinnati Children’s Hospital
Medical Center
Peter Margolis, MD, PhD Improvement Advisor
Esi Morgan DeWitt, MD, MSCE Quality Improvement Leader
Nancy Griffin, BSN, MPA, CPHQ Senior Quality Improvement Consultant
Anne Paul, MBA, MA Project Manager
Jesse Pratt, MS Data Analyst
Jason Stock, BS Data Manager
Stacy France, Coordinator, Data Management
Lindsey Bergheger, MHA Project Specialist
Tracey Flynn, Project Coordinator
PR-COIN Contact Information
[email protected]
Fax 513-636-0171 Attention: PR-COIN
We are glad you are joining us!
Please contact us anytime at
[email protected]
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Pediatric Rheumatology
Care and Outcomes Improvement Network
Please complete this brief Intent to Apply Form and email to [email protected]
Organization Name: ______________________________________________ Date: __________________
Lead Physician Name: _____________________________________________________________________
Title: ___________________________________________________________________________________
Address: ________________________________________________________________________________
City: _________________________________ State:___________________ Zip/Postal Code: ___________
Phone: __________________________________ Fax: __________________________________________
Email: _________________________________________________________________________________
Key Contact Person (for typical correspondence): _______________________________________________
Phone: __________________________________ Fax: __________________________________________
Email: _________________________________________________________________________________
IRB Contact: _______________________________________________________________________
Phone: __________________________________ Fax: __________________________________________
Email: __________________________________________________________________________________
Legal Contact: _______________________________________________________________________
Phone: __________________________________ Fax: __________________________________________
Email: __________________________________________________________________________________
By submitting this intent to apply, we agree to submit the full application within one month.
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Pediatric Rheumatology
Care and Outcomes Improvement Network
Interested sites should please complete the information below and return your completed application
to [email protected]
Site Name: ____________________________________________________________________
Site Address: __________________________________________________________________
Name of person completing this application: _____________________________________
Title: _________________________________________________________________________
Email: ________________________________________________________________________
Phone number: _____________________________
1. Briefly describe the aspects of your hospital/clinic/organization that relate to care of the child with
juvenile idiopathic arthritis (clinic size, providers e.g. doctors, physician assistant, nurse practitioners,
number of nurses) hospital based or outreach clinics, location (specify; urban, rural, suburban), social
worker in clinic.
2. Please estimate the number of children your site sees each year with newly diagnosed JIA:
3. Please estimate the number of children with JIA that currently receive care at your site (e.g. patient has
had an appointment within past year): ________
4. At routine clinic appointments, are any of the following data collected:
a. Pain Scores
□ Yes □ No
b. HRQOL (health related quality of life) Measure
(Indicate which one)________________________________________
c. Physical Function Measure
(Indicate which one)________________________________________
□ Yes □ No
□ Yes □ No
d. Physician Global Assessment of Disease Activity
e. Parent Assessment of Overall Well-being
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5. Does your pediatric rheumatology team utilize an electronic health record (EHR)? Please describe
(name/vendor, how long have you been using this EHR).
If not currently on an EHR, any plans to adopt an EHR in future? Vendor selected?
If currently on an EHR, any plans to switch vendors?
6. Does your pediatric rheumatology team utilize a physical therapist and/or occupational therapist as
part of your outpatient clinical team on a regular basis? Please describe resources available to you for
rehabilitation support.
7. Briefly describe any experience that you or others have in initiating successful improvement activities,
participating in a learning network or any experience with measurement of quality outcomes. In what topic
area(s)? Do you have quality improvement support within the unit structure or from the hospital? Examples of
this support would be: data collection, team facilitation, meeting documentation and planning for
improvement activities aimed at helping you accomplish your goals.
8. Briefly describe what your organization wants to accomplish as a participant in PR-COIN:
9. Please add any additional information about your setting that may be relevant to this project.
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Site Team
A site core team typically consists of a physician or nurse practitioner lead, a member of the ancillary
nursing staff, administrative or clerical staff members, and others as meets your needs.
Team Member – Key Contact
The Key Contact serves as a day – day liaison to disseminate information between your team and
PR-COIN and can coordinate day-to-day activities of the project including regular practice
improvement team meetings, managing improvement responsibilities and ensuring reports and/or
data are collected and reported. It is best that the Key Contact not be a physician.
Name: ________________________________________Title: __________________________________
Direct Phone: _________________________________ Direct Fax: ____________________________
Email: ______________________________________________________________________________
Team Member
Name: ________________________________________Title: __________________________________
Direct Phone: _________________________________ Direct Fax: ____________________________
Email: ______________________________________________________________________________
Team Member
Name: ________________________________________Title: __________________________________
Direct Phone: _________________________________ Direct Fax: ____________________________
Email: ______________________________________________________________________________
Team Member
Name: ________________________________________Title: __________________________________
Direct Phone: _________________________________ Direct Fax: ____________________________
Email: ______________________________________________________________________________
Team Member
Name: ________________________________________Title: __________________________________
Direct Phone: _________________________________ Direct Fax: ____________________________
Email: ______________________________________________________________________________
Please submit ALL Team Members
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The Senior Leader should be someone outside the improvement team who has
administrative oversight for the clinical area and can materially and politically
support the improvement team in this endeavor, including removing barriers to
Name: ___________________________________________________________________________________
Title: ____________________________________________________________________________________
Direct Phone: _______________________________ Direct Fax: ___________________________________
Email: ___________________________________________________________________________________
As Senior Leaders, we fully understand the project’s objectives and expectations and pledge to
support our team in their data collection and improvement work by reducing barriers and
providing resources necessary to achieve PR-COIN improvement goals. Furthermore I agree our
center will remit $10,000 participation fee annually to join PR-COIN. I understand full payment of
the annual participation fee is required to receive full privileges of PR-COIN membership.
Rheumatology Division Senior Leader Signature
Rheumatology Clinic Director/Manager Signature
Rheumatology Nursing Senior Leader Signature
This signature page must be received with your application in order for your application to be considered.
Please email to [email protected]
The Pediatric Rheumatology Care and Outcomes Improvement Network Project team looks forward
to working with you!
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Pediatric Rheumatology Care and Outcomes Improvement Network