HCRN Core Data Project: Characterizing Patient Populations in the Hydrocephalus Clinical Research Network (HCRN)

The Hydrocephalus Clinical Research Network (HCRN) has been established by philanthropic
funding to conduct multi-institutional research (clinical trials and observational studies)
on pediatric hydrocephalus. In addition to philanthropic funding, the HCRN has also received
an NIH NINDS Challenge Grant to support the network infrastructure which allows for the
conduct of this and other network studies. The HCRN consists of multiple Clinical Centers and
the Data Coordinating Center (DCC). The HCRN Core Data Project will obtain data about all
neurosurgical hydrocephalus events from the network Clinical Centers, and create a database
to be used by HCRN investigators. The ongoing maintenance of the Core Data Project serves two
main purposes: 1) it will help investigators understand the variability, progression, and
current treatment practices for hydrocephalus in children, with an ultimate goal of better
guiding and assessing therapeutic intervention and providing recommendations on patient care
and, 2) it will provide pilot and descriptive data necessary for hypothesis generation and
study design (i.e. preliminary power analyses, recruitment projections) for studies under
development by the HCRN. This multi-institutional database will be maintained throughout the
lifetime of the HCRN, and may be useful for tracking trends in pediatric hydrocephalus over
time. The Core Data Project will be an invaluable resource to the HCRN and will help
stimulate new research protocols, identify potential need for future expansion of the network
to incorporate additional patient populations, and provide a descriptive understanding of
children with hydrocephalus cared for within the network.