CPRN Investigators Meeting

Thursday, May 31 – Friday, June 1, 2018
Texas Children’s Hospital, Texas Children’s Pavilion for Women, 4th Floor, Rooms B & C
Houston, TX


Topic Speaker Video Presentation
Thursday, May 31 – 8 am – 5 pm
Review CPRN progress against goals, future directions Gross 30 min
NIH Strategic Plan for CP and NCMRR success stories Nitkin 30 min
Research CP Overview Hurvitz 20 min
Reflections from community members
Alexander’s Story Diller 15 min
Nancy’s Story Yagodich 15 min
Bower’s Story Lyman 15 min
CPRN Registries Infrastructure
Clinical Registry Noritz 10 min
Community Registry Gross 10 min after Noritz
DCC and NCH registry infrastructure Kean 30 min
Existing studies and approved concepts
Video of all approved studies and concepts
CP and Epilespy Ostendorf 20 min
Baclofen Pump QI Bollo Starts at 20 min
Genetics of CP Kruer Starts at 43 min
Adult registry studies of pain and social and emotional outcomes Gannotti Starts at 63 min
Joint Decision Making in Supported Mobility Bjornson Starts at 77:30 min
New Concepts (not for approval)
Video of All New Concepts
Surgical Disparities Dabney 15 min
Selective Dorsal Rhizotomy v. Botox Gross starts at 15 min
Orthopedics QI McCarthy starts at 27 min
Pediatric Patient Reported Outcomes with CP PRO Kean starts at 42 min
SEMLS and PT Bailes starts at 51:45
Spasticity management in GMFCS IV-V Thomas starts at 1:09:30
Research CP study gaps discussion Hurvitz et.al. 30 min
Raw notes from gaps brainstorming
Friday, June 1, 2018
Breakout 1A: Physical Activity and Understanding Aging Hurvitz et.al.
Breakout 1B: Comparative Effectiveness of Interventions Bailes et.al.
Breakout 2: Epic Forms Noritz et.al.
Breakout 3A: Medical Decision Making Glader et.al.
Breakout 3B: PROs in Clinical Practice Gross et.al.
Breakout 4: Coordinating Care Lunsford et.al.