On day one, we will be discussing our progress toward becoming a Learning Health Network (there will be pre-reading). Our breakouts on day one will be used to determine how to grow our work across several domains. While we may pre-assign you to work on one of these domains, please indicate your preference for one or more of these domains. Each topic will include a rubric and an assessment of where the network is in terms of maturity. The breakout will be focused on concrete steps to advance the maturity of our collaborative work.
Day two will be focused on ongoing research and QI projects as well as new concepts. We expect to have several breakouts and rotations. The planning for these is quite challenging as we need to squeeze a lot of content/discussion into approximately three hours. Please see the descriptions below to determine if you want to participate in a breakout on this topic. Some breakouts will be repeated to keep the working group size small. Others may require more attendees to join and will be more of a presentation and Q&A format. Please rate your interest in each topic if you will be in attendance
Study overview and prerequisites to join for interested sites; study updates for existing sites
Objectives: 1. Highlight opportunities for collaboration (joining existing study) 2. Troubleshoot logistics and any barriers to rollout among participating sites 3. Gauge interest in new R01 application: ADVANCE CP study focusing on CP causality and clinical implications of genetic findings in CP
Leader(s): Ed Hurvitz, MD Time: 45 minutes
Increasing Capacity of care for adults with cerebral palsy
In this session, we will discuss ideas to increase outreach to adults with cerebral palsy, including the use of telemedicine. We will discuss limitations of virtual care and potential ways to improve assessment and develop intervention protocols, including accessing community resources, working with community physicians, and other ideas.
Objectives: 1. I would like to hear ideas and suggestions to improve and expand the methodology for outreach 2. Similarly, hear thoughts about assessment and intervention via telemedicine 3. Suggestions for developing research protocols to assess this project.
Leader(s): Garey Noritz, MD Time: 45 minutes
Adult QI Initiatives
We'll discuss the state of the current adult QI project and brainstorm others.
Objectives: Use QI techniques to improve care of adults with CP across the network
Leader(s): Wade Shrader, MD, Amanda Whitaker, MD Time: 1 hour
Practice Variation in Hip Surveillance in CPRN
We will present the current state of practice variation of hip surveillance in CPRN, discuss the current QI process to improve hip surveillance, and brainstorm about ways to expand this work across the network
Objectives: 1. Hip QI team to understand more broadly from representative across the network issues that affect hip surveillance 2. Inform the CPRN membership about the status of the Hip QI process 3. Recruit additional site for future QI cycles for Hip surveillance
Leader(s): Bhooma Aravamuthan, MD, DPhil, Darcy Fehlings, MD Time: 1 hour
Research priorities for dystonia in CP - how do we leverage the CPRN?
We have recently concluded the Research CP: Dystonia Edition initiative and generated a top ten list of research objectives for improving the care and diagnosis of dystonia in people with CP. One of these research objectives is being pursued through our Dystonia QI Committee - improving screening for dystonia in people with CP. We want to discuss how the CPRN registry and infrastructure can be leveraged to begin addressing the other generated research objectives.
Objectives: 1) Outline the community-driven research objectives for improving the care and diagnosis of dystonia in CP 2) Develop project ideas that can be accomplished by leveraging the CPRN registry and infrastructure to help address these research objectives
Leader(s): Rob Bollo, MD, Amy Bailes, PT, PhD Time: 30 minutes
Breakout Title: ITB Surgery QI overview
Breakout description: An overview of our QI process and change package.
Objectives: Explain the protocol, explain the run charts, explain the change package
Leader(s): Unni Narayanan, MD, Darcy Fehlings, MD, Laurie Glader, MD Time: 1 hour
Breakout Title: Goal based ePROMS for Decision Making - Update on the eGOAL, eCPCHILD & the new CPCHILD Health Module
Breakout description: The CPCHILD and the GOAL are two validated, priority-based PROMs for non-ambulatory and ambulatory CP respectively. These measures are unique in their design to capture patient/parent specific goals concurrently with completion of PROMs in the context of a clinical encounter. This feature empowers patients and parents to articulate their goals and enables clinicians to identify these goals efficiently and comprehensively, and the opportunity to respond to them. This feature of the PROMs creates added value for patients, parents and their clinicians beyond their utility to track outcomes. In this breakout, we will review the features of the eGOAL and eCPCHILD, and how these might be used for the dual purpose of enhancing shared decision-making while measuring meaningful outcomes for research, quality improvement, or tracking clinical progress. We will also introduce the new CPCHILD health module that we want to pilot with you to determine its sensibility, face and content validity and its potential clinical utility when applied (in conjunction with the CPCHILD) to children with complexity and multiple co-morbidities.
Objectives: Familiarize attendees and receive feedback from them about: 1. eGOAL 2. eCPCHILD 3. New Health Module of CPCHILD - pilot its sensibility and clinical utility
Leader(s): Jeff Leonard, MD, Kristie Bjornson, PhD, Jacob Kean, PhD, Paul Gross Time: 1 hour
Breakout Title: Functional Improvements Related to Spasticity Treatments (FIRST) Re-submission aims and approach
Breakout description: FIRST, nee SDR v. BTA, is a resubmission to NIH for our comparative effectiveness study of SDR. This breakout will review the changes in the aims in response to reviewer feedback and the approach to prepare interested site PIs for the upcoming subcontracting phase of the submission. We will also discuss the academic potential for the data set we plan to collect.
Objectives: 1. Understand FIRST revised aims and the implications for the study design.2. Discuss approach and ramifications for resourcing and budgeting the study. 3. Brainstorm academic opportunities enabled by the study.
Leader(s): Michele Shusterman, Paul Gross Time: 30 minutes
Breakout Title: What does our merger mean for our work and how can you help the new entity?
Breakout description: The merger of CPRN and CP NOW has expanded the CP Research Network mission and added new capabilities and requirements to our collective work. What is different for the investigators in terms of scope of work and opportunities to volunteer? What are the ramifications of the merger for our standard operating procedures and how does the nonprofit status affect the "business model" of the network.
Objectives: 1. Understand the evolving structure and processes of the network post merger.2. Discuss opportunities for volunteering to address expanded mission.
Cerebral Palsy Research Network
PO Box 8347
Greenville, SC 29604
Phone: 402 302-CPRN (2776)