CP Research Workshop Attendees Selected

The Cerebral Palsy Research Network (CPRN), in partnership with CP NOW, will convene a 40-person workshop in Chicago, IL in June, 2017 as part of the the Research CP initiative to set a patient-centered research agenda for cerebral palsy (CP). Twenty-two members of the CP community will represent a broad swath of people living with CP including:

  • Seven adults with CP
  • Four caregivers of adults with CP
  • and 11 parents of children with CP.

The attendees were selected from 43 applicants who sought to participate in the meeting after engaging with more than 150 community members involved in the Research CP educational series and surveys. Joining the CP community participants will be twenty-one members of the CP clinical research including:

  • Three developmental pediatricians
  • Two neurologists
  • Two neurosurgeons
  • Two orthopedic surgeons
  • Three physical medicine and rehabilitation doctors
  • Four therapists (Three PTs and one OT)
  • Five Ph.D., researchers including expertise in biostatistics, neuroscience, measurement and assessment, physical therapy, rehabilitation science, speech and language, and kinesiology.

These professional attendees represent some of the most committed and accomplished clinician researchers who treat people with CP. Most of the professional attendees are also members of the American Academy for Cerebral Palsy and Developmental Medicine which is supporting the Research CP initiative.

The Research CP workshop, which will be streamed to the public, will seek to synthesize the more than 300 research ideas that were generated by CP professionals and community members in March, 2017. The synthesis will result in the ultimate goal of a prioritized patient-centered research agenda for CP which will be published broadly. The meeting will be professionally facilitated by an expert in medical research prioritization processes. The Research CP workshop is partially funded through a Eugene Washington PCORI award.

CPRN PI to Study Genetics of Cerebral Palsy

Michael Kruer, M.D.

Michael Kruer, M.D.

The Cerebral Palsy Research Network (CPRN) is pleased to announce that Michael Kruer, M.D., a pediatric neurologist at Phoenix Children’s Hospital, is joining the CPRN investigator team. Dr. Kruer specializes in the genetics of cerebral palsy and recently joined the International Cerebral Palsy Genomics Consortium. Pediatric neurosurgeon Taryn Bragg, M.D., has been named as the alternate principal investigator from Phoenix Children’s Hospital. Phoenix Children’s Hospital has been a “fast follower” of the CPRN registry and has demonstrated significant commitment to our research objectives. Read more

The Final Webinar – Patient Registries – Completes Research CP Series

Jay Riva-Cambrin, M.D.

Jay Riva-Cambrin, M.D.

Megan O'Bolyle

Megan O’Bolyle

Research CP, an initiative to set a patient-centered research agenda for cerebral palsy (CP), has concluded its educational webinar series of five with this week’s final webinar on patient registries. The Cerebral Palsy Research Network (CPRN) and CP NOW are grateful to pediatric neurosurgeon Jay Riva-Cambrin, M.D. and Megan O’Boyle for their informative presentations on the value of patient registries. CPRN chairman Paul Gross also described existing and planned CP registries in the United States. The webinar covered a range of types and benefits of patient registries from two other medical conditions with well established registries. The webinar recording is still available for viewing.

With the completion of the webinar series, the Research CP project now moves into its next phase of preparing for the Research CP workshop that will be held in mid June 2017 in Chicago. This phase includes not only the selection of the attendees but also further processing of the initial set of research ideas that were generated by the collaborative survey that ran in parallel with the webinar series.

Nearly 400 research ideas were generated and voted upon by 182 people from the CP community of patients, parents/caregivers and advocates and from medical professionals who treat CP including doctors and therapists. For example, one of the leading research ideas culled from the surveys is “Research the issues aging with CP, to understand not only how to treat adults now, but to also update our treatments and therapies with children who have CP to prevent some of the secondary issues of pain, fatigue and functional loss.”

The Research CP workshop, which will include a balanced mix of attendees including patients, parents/caregivers, CP advocates and medical professionals, will synthesize the research ideas into a prioritized research agenda that will be published, shared broadly with researchers and will guide CPRN in its selection of future study concepts. The input from the CP community is invaluable to setting a patient-centered agenda that will hopefully improve outcomes long term.

Learn about the Power of Patient Registries

Fifth and Final Research CP Webinar airs Tuesday, April 4, 2017 at 8 pm ET

Join Cerebral Palsy Research Network (CPRN) Chairman and Founder Paul Gross and guest speakers, pediatric neurosurgeon Jay Riva-Cambrin, M.D., and Phelan McDermid Syndrome Data Network Principal Investigator (PI) Megan O’Boyle, for an educational presentation on patient registries. Dr. Riva-Cambrin, PI for the Hydrocephalus Clinical Research Network (HCRN) Core Data Project, will share learnings from his 10 years of running a large-scale clinical registry for hydrocephalus. Ms. O’Boyle, PI for the Phelan McDermid Syndrome patient-powered registry will share her insights from her experience running a patient registry where data comes directly from patients and caregivers rather than in the clinical setting. Both speakers will demonstrate the importance and power of participating in research through different types of patient registries — for community members and researchers. It you are not available to watch the webinar live, it will be recorded so you can view it later.

Register for the Patient Registries Webinar now!

Gross, who co-founded HCRN in 2006, will share the plans for two CPRN registries — both a clinical and patient-powered (or community) registry. This webinar is the fifth and last webinar in the Research CP webinar series. Research CP, a PCORI funded initiative to set a patient-centered research agenda for cerebral palsy, will culminate in a in-person workshop in Chicago in June 2017 to synthesize input from the CP community as to what is most important in research. The webinar series, which can be viewed online at the Research CP webinar series page, is a critical component in establishing a common language for clinicians who treat people with CP and the broader CP community including caregivers and people with CP.