Dr. David P. Roye: Research Announcement

Surgical Decision Making for Families of Children with Cerebral Palsy: A Practice-Based Evidence Study

The Cerebral Palsy Foundation is proud to support an important multisite project spearheaded by the Cerebral Palsy Research Network. The study team lead by Dr. Richard Stevenson at the University of Virginia consists of physicians and therapists from 18 centers across the US and Canada, parents and advocacy groups from around North America dedicated to improving the care given to children with CP.

The purpose of this study is to create a comprehensive registry that will allow the group to explore the effectiveness of surgical and non-surgical interventions that address motor disorders in CP using a comparative effectiveness paradigm to compare treatment alternatives, and outcome measures most relevant to the patient and family goals. Specific Aims:

• Aim 1: Compare the effectiveness of different surgical treatments with each other and non-operative treatments. As well as natural history based on the primary outcomes (GOAL and CPCHILD) and secondary outcomes at 1 and 2 years (primary endpoints).
• Aim 2: Determine which patient characteristics are associated with best (and worst) outcomes at 1 and 2 years for each surgical procedure to better define the appropriate indications for each procedure.
• Aim 3: Explore the association between changes in International Classification of Function (ICF) measures of body structure and function with changes in the child and parent-reported goal based primary outcome and other measures of activity, participation, and health related quality of life.

For further details and a full list of the investigators and stakeholders involved please visit Cerebral Palsy Research Network at www.cpresearch.net