Cerebral Palsy Research Network Blog

Archive for March 2017

Patient-centered research webinar well attended!

Jacob Kean, Ph.D.

Jacob Kean, Ph.D., University of Utah

Last night, Research CP held its fourth webinar on the new paradigm of patient-centered research and patient reported outcomes with Jacob Kean, Ph.D. of the University of Utah. Dr. Kean is an expert in patient reported outcome measures and and also a speech language pathologist. Many thanks to Dr. Kean for his time and insight!

More than 70 people attended the live webinar and engaged in 30 minutes of Q and A. The recorded version if available now. The topic of patient centered research is at the heart of Research CP – a collaborative effort between CP NOW and CPRN – that includes the educational webinar series, collaborative surveys and culminates in a 1.5 day workshop in Chicago in June 2017.

Reminder: Only two days left to apply to attend the workshop. You need to watch webinar #1 to get the application.

Research CP has also completed phase one of the collaborative survey on Codigital. Results of this open community effort will be essential input to the workshop in June to set the patient-centered research agenda for cerebral palsy. More than 300 people were invited and hundreds of research and care ideas were shared and voted upon as part of the first phase of the collaborative survey.

Don’t forget to mark your calendar for the last webinar on patient registries featuring speakers:

  • Megan O’Boyle is the Principal Investigator of Phelan McDermid Syndrome patient powered registry, and
  • Jay Riva-Cambrin, M.D., is a pediatric neurosurgeon and the Principal Investigator the clinical registry in the Hydrocpehalus Clinical Research Network.

The final webinar is on Tuesday, April 4, 2017 at 8 pm ET. Thanks to Michele Shusterman of CP NOW for her support of Research CP and to all of you who are participating and adding value to the research process.