Cerebral Palsy Research Network Blog

Archive for Patient Engagement – Page 2

Be Heard! Join MyCerebralPalsy.org

MyCerebralPalsy.org (MyCP)

MyCerebralPalsy.org (MyCP)

The Cerebral Palsy Research Network (CPRN) has launched its community web portal called MyCerebralPalsy.org (MyCP). MyCP is a destination where members of the community with cerebral palsy (CP) – both people with CP and their caregivers – along with advocates, researchers and clinicians, can engage in discussions about research and participate in surveys. MyCP will provide access to three primary services:

  1. the CPRN Community Registry – a database of people with CP confidentially and privately sharing information about their condition with researchers through surveys;
  2. the MyCP forum – a place for discussions among community members, clinicians and advocates about CP research;
  3. Research News – a blog about groundbreaking studies, new evidence from research and research in progress with CPRN.

The CPRN Community Registry allows members of the community to participate in confidential surveys about their experience with CP. This information is used by CPRN researchers to understand the natural history of CP to generate new knowledge for future research and enhancements to services for people with CP. It also allows CPRN to find members of the community who want to participate in clinical trials or other studies. All information gathered in the CPRN Community Registry is stored securely at the University of Utah under the guidance of the University of Utah ethics board (institutional review board).

The MyCP forum provides member to member discussions about important research topics such as “what is the most pressing thing to study in CP?” MyCP members includes people in the community with CP, their caregivers, advocates, clinicians and researchers. All identities are protected and the discussions are not accessible by non-members or search engines. MyCP discussions help direct the course of research at CPRN.