DELAWARE STATE SENATE

152nd GENERAL ASSEMBLY

SENATE CONCURRENT RESOLUTION NO. 187

RECOGNIZING THE IMPORTANCE OF ESTABLISHING A STATEWIDE CEREBRAL PALSY REGISTRY.

WHEREAS, cerebral palsy is a group of neurological disorders that appear in early childhood and affect muscle coordination and movement; and

WHEREAS, cerebral palsy is not a genetic or contagious condition, but can be caused due to brain damage, infant illness, or abnormal brain development during gestation, during birth, or soon after; and

WHEREAS, symptoms of cerebral palsy can vary greatly from individual to individual, and 75% of individuals with cerebral palsy also have one or more developmental disabilities, including epilepsy, an intellectual disability, autism, or visual impairment or blindness; and

WHEREAS, according to the Centers for Disease Control and Prevention (CDC), approximately 1 in 345 children in the United States have been diagnosed with cerebral palsy, making it the most common motor disability in children; and

WHEREAS, nearly one million people are living with cerebral palsy in the United States; and

WHEREAS, patient disease registries are instrumental in gathering accurate and timely information about specific patient groups or conditions, such as cerebral palsy; and

WHEREAS, disease registries can serve as resources for physicians, researchers, and the cerebral palsy community by facilitating quality improvement initiatives and research endeavors, as well as providing crucial population-level data; and

WHEREAS, cerebral palsy registries can allow researchers to understand changes in population demographics, predict clinical outcomes, and evaluate the safety of healthcare technologies, especially in regard to questions that may not be feasible to address through controlled trials; and

WHEREAS, there are currently cerebral palsy registries operating in Australia and Europe, but there is no current comprehensive United States cerebral palsy registry, nor are there any state-level cerebral palsy registries; and

WHEREAS, establishing a Delaware cerebral palsy registry will increase awareness of cerebral palsy and help physicians and researchers work towards better outcomes for patients and families affected by this disorder, while also providing a platform for individuals with cerebral palsy to share their stories, experiences, and challenges.

NOW, THEREFORE:

BE IT RESOLVED by the Senate of the 152 ^nd General Assembly of the State of Delaware, the House of Representatives concurring therein, that the General Assembly affirms the importance of increasing awareness of cerebral palsy to support continued research and furthering opportunities for continued advocacy, thereby recognizing the need for a statewide cerebral palsy registry.

SYNOPSIS

This resolution raises awareness of cerebral palsy and highlights the need for a statewide cerebral palsy registry in the State of Delaware.

Author: Senator Poore