Cerebral Palsy Research Network Blog

Archive for Cerebral Palsy Registry – Page 2

CPRN Launches Two New Studies

The Cerebral Palsy Research Network (CPRN) has launched two new studies in its Community Registry hosted at MyCP.org.  The first study, “Speech and Language Predictors of Participation for Children with Cerebral Palsy (CP),” is intended for parents or caregivers of children ages 4-17.  The principal investigator, Dr. Kristen Allison of Northeastern University, was awarded the CP NOW Research CP award in November 2019 in support of creating this study.  Dr. Allison hopes to enroll at least 100 participants which is conducted entirely online.  The second study, “Community views on cerebral palsy diagnosis,” was developed by Dr. Bhooma Aravamuthan of Washington University, to understand the meaning and the impact of different diagnoses related to CP have on families.  The survey is available to parents and caregivers for children and adults with CP 18 years and older.  Both studies can be taken by signing up for MyCP.org.

MyCerebralPalsy.org (MyCP)
Join MyCP!

The CPRN Community Registry captures data directly from members of the community through our web portal at MyCP.org.  More than 600 members of the community have signed up for MyCP. Community Registry studies are de-identified so there is no personally identifying information in the studies.  Many of the studies in the Community Registry are longitudinal so they track outcomes over a long time. These two new studies are single studies with no follow-on annual measures.  The speech and participation study does have potential compensation in the form of a drawing for a $100 Amazon gift card though most studies do not have similar incentive.  Your time participating in these studies helps CPRN advance research that would not be possible without your direct input.

Webinar: Report from the Cerebral Palsy Registry

The Cerebral Palsy Research Network (CPRN) announced its second webinar in its MyCP Webinar Series entitled a “Report from the CPRN Cerebral Palsy Registry” would be open to the public on Thursday, April 23 at 8 pm via Zoom.  Dr. Garey Noritz, a developmental pediatrician and the Director of the Comprehensive Cerebral Palsy Program at Nationwide Children’s Hospital, will present the initial findings from the CP registry which includes both children and adults.  This 20-minute presentation will be followed by an open Q&A with Dr. Noritz.

Dr. Noritz is the principal investigator for the CPRN CP Registry which gathers medical, surgical and outcome data from patients during clinical care.  The CPRN CP Registry is critical infrastructure to accelerate CP research and was created in response to the strategic plan for cerebral palsy issued by the National Institutes of Health following a workshop on the state-of-the-science and treatment in CP in late 2014.  This presentation has been crafted specifically for the CP community to understand CPRN’s focus on research to improve outcomes in CP.

Interested participants need to register for the webinar to be sent instructions for joining.  Webinars will be recorded and posted for later viewing.  The MyCP Webinar series includes one presentation per month on different aspects of CPRN’s research studies.  Please join us!

CPRN Abstracts Accepted for AACPDM Annual Meeting

The Cerebral Palsy Research Network (CPRN) received acceptances for all four abstracts that its investigators submitted to the annual meeting of the American Academy for Cerebral Palsy and Developmental Medicine (AACPDM) to be held on September 23-26, 2020 in New Orleans, Louisiana.  CPRN noted that it submitted half as many abstracts this year because four of the eight from last year are proceeding toward publication!  The annual AACPDM meeting is a great way for CPRN to disseminate its findings to the broader cerebral palsy provider and research community.

This year’s abstracts include:

  • A scientific presentation on the CPRN clinical cerebral registry by Garey Noritz, MD.
  • Two scientific presentations on adults with CP – one on health and wellbeing and the other on pain by Mary Gannotti, PT PhD.
  • A breakfast seminar on how to participate in registry-based research with CPRN by Paul Gross and Garey Noritz, MD.

These presentations, like last year, are powered by the growth in the CPRN clinical and community registries which follow people with CP over the long term.  Dr. Gannotti’s presentation will provide an interim report on adults from CPRN’s community registry hosted at MyCP.org. Dr. Noritz’s presentation will describe the characteristics of several thousand CP patients enrolled in the CPRN clinical registry from 12 sites including surgical interventions.  Dr. Noritz and Mr. Gross will present researchers with how they can tap into these two registries to generate new knowledge in CP. People interested in preliminary versions of these presentations can sign up for the MyCP webinar series where Dr. Noritz will be presenting a snapshot of the CPRN clinical registry on April 23, 2020.