PEDSnet, a patient-centered clinical data research network led by The Children’s Hospital of Philadelphia, received $8.6 million in funding to continue its discovery and implementation of new ways to provide the best care and outcomes for children.
Christopher B. Forrest, MD, PhD, a CHOP pediatrician, recently received a two-year grant to develop PROMIS pediatric sleep health measures that will fill this gap and enable patients and their families to express exactly how health conditions and treatments affect their sleep.
The research team concluded that early detection and gene therapy may offer the best results among infants diagnosed with Canavan disease. Canavan disease is a rare inherited neurological disorder with devastating effect. The lack of a specific enzyme, called aspartoacylase, causes the body's central nervous system to break down. The disease is usually fatal before a child reaches the teenage years.