1. CP Research and Research Priorities
Edward A. Hurvitz, MD
Executive committee, CPRN

2. NIH research Priorities for CP
NIH Workshop on CP in November 2014 Key Takeaways
Start a national CP registry
Pursue Comparative Effectiveness Research question
Increase the study of adults
Bring more young clinician scientists into the field
Advance basic and translational science for CP

3. NIH Research Priorities for CPRN
From the NIH strategic plan for CP research
Early diagnosis for early intervention
Examine interventions across the clinical spectrum
Examine combinations of therapies
Examine new study designs
Increase quality and availability of PRO’s

4. Conduct a series of webinars to educate community and clinicians
Build and distribute a priorities survey for the patient and providers
Convene a workshop to set a research agenda
Publish a whitepaper outlining the community’s agenda for CP

5. From Webinars to the Workshop
Webinars provided context and capability
Codigital enabled unprecedented engagement in research dialogue
Resulted in 390 research ideas
Brought top 20 ideas to the workshop in Chicago in June 2017
24 patients/caregivers and 23 clinician / researchers
1.5 day workshop winnowed result to top 16 ideas
Other learnings: importance of longitudinal studies, participation as a key outcome measure and the importance of patient engagement

6. Top Ideas Fit into Three Themes
Comparative Effectiveness of Interventions: Which interventions [surgeries, injections, medications and therapies (orthotics, equipment, training)] are associated with better functional outcomes (important to child/ family) controlling for GMFCS level, age and co-morbidities?
Exercise, Physical Activity and Chronic Disease Risk: What are the best long term exercise/strength training strategies to improve activity, participation and health, minimize pain, and maximize function in each GMFCS category across the lifespan?
Understanding Aging: Research the issues around aging with CP, to understand not only how to treat adults now, but also to update our treatments & therapies with children who have CP to prevent some of the secondary impairments such as pain, fatigue, and functional loss.

7. Other Research Items, e.g.
Increasing age is related to pain and fatigue in people with CP, regardless of GMFCS level. What variables are important to monitor / treat early on in life to prevent the development of pain and fatigue later on in life?
How can we best leverage the brain's neuroplasticity to retrain neural pathways for improved motor function, speech function and mobility?
Study the outcomes of complementary and nontraditional therapies, i.e. hyperbaric oxygen, hippo, swimming/aquatic, Feldenkrais, massage, yoga, Tai Chi, music, recreational, acupuncture, etc. Reviewing efficacy, costs, insurance support probabilities.

8. Key Takeaways
Importance for researchers to stay engaged w/ extended community
Need for longitudinal studies to drive care and research
Desire to keep momentum from Research CP initiative
Outcomes need to include participation
Importance of adult perspective
Our next steps in research must be balanced to be inclusive (not just one group [GMFCS] or age)

9. CP Research Priorities
Compartive Effectiveness/Interventions
Physical Activity
Comparative Effectiveness
CPRN Registry
SDR vs. Botox
Best Practices/QI
ITB QI
Orthopedic Indications
Surgical Disparities
Supported Mobility
Epilepsy
Innovations
No Entry
Levels of Physical Activty
No Entry
Exercise Strategies
Chronic Disease Risk
Affect on Outcomes (e.g. pain)

10. CP Research Priorities
Aging/Longitudinal
Pain/Fatigue
Understanding Aging Process
No Entry
Adult Outcomes/Issues
CPRN Registry
Adult Social/Emotional/Function
Adult Pain
Longitudinal Outcomes
CP PRO
Prevention
Adult Pain
Treatment
Trials
No Entry

11. CP Research Priorities
CAM
Neuroplasticity
Comparative Effectiveness
No Entry
Cost and Coverage
Understanding Mechanism
No Entry
Trials

12. NIH WORKSHOP PRIORITIES
Workshop Priority
CPRN Addressing?
Start a National Registry
Yes
Comparative Effectiveness
Starting-SDR vs. Botox
Studies of Adults
Starting-Adult Pain, Adult Outcomes
Bring in New Researchers
Starting
Basic and Translational
Not a goal for CPRN

13. NIH/NCMRR PRIORITIES FOR CP
NIH/NCMRR PRIORITY
CPRN ADDRESSING?
Early Diagnosis and Intervention
Starting-Genetics
Examine Interventions Across Spectrum
Yes-several studies
Examine Combinations of Therapies No
Examine New Study Designs
Yes-PBE
Increase PRO’s
Yes-CP PRO, Adult studies

14. Call to Action Physical Activity studies using CPRN
More studies in highest priority areas
Interventions, especially CER
Aging
Longitudinal design
Pain
Early Diagnosis and Treatment
Think about:
Where does CAM and Plasticity fit for CPRN
Other areas of study