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

Recruiting now

Conditions studied: Pediatric Hydrocephalus

In brief

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.

Key facts

Study ID

NCT00670735

Run by

University of Utah

People needed

1400

Starts

2008-04-01

Expected to finish

2029-12-01

Last updated by the study team

2026-05-14

Who can join

Age: any, up to 18. Sex: any. Healthy volunteers: not accepted.

You may qualify if…

• Information for all neurosurgical hydrocephalus patient events will be obtained from each HCRN Clinical Center and will be placed continuously into the Core Data Project. The first calendar year will be 2008, and data collection will continue for the duration of the existence of the HCRN. Neurosurgical hydrocephalus patient events include any operation for the treatment of documented hydrocephalus including the following:
• Ventriculoperitoneal shunt
• Ventriculoatrial shunt
• Ventriculopleural shunt
• Arachnoid cyst shunts
• Subdural shunts
• Lumboperitoneal shunts
• Shunts replaced after treatment of infection
• Shunts exposed during an operations but not revised
• Endoscopic third ventriculostomies
• Ommaya reservoir(s)
• Ventricular access devices/reservoirs
• Subgaleal shunts.

You may not qualify if…

• The following temporary cerebrospinal fluid (CSF) diversion procedures will not be included in the Core Date Project:
• External ventricular drain(s)

Where it is running

• Sick Children's Hospital — Toronto, Ontario, Canada (enrolling)
• Children's Hospital of Los Angeles — Los Angeles, California, United States (enrolling)
• Children's Hospital Colorado — Aurora, Colorado, United States (enrolling)
• Children's Hospital of Alabama, University of Alabama — Birmingham, Alabama, United States (enrolling)
• St. Louis Children's Hospital — St Louis, Missouri, United States (enrolling)
• Nationwide Children's Hospital — Columbus, Ohio, United States (enrolling)
• Children's Hospital of Pittsburgh of UPMC — Pittsburgh, Pennsylvania, United States (enrolling)
• Monroe Carell Jr. Children's Hospital at Vanderbilt — Nashville, Tennessee, United States (enrolling)
• Texas Children's Hospital — Houston, Texas, United States (enrolling)
• Primary Children's Hospital — Salt Lake City, Utah, United States (enrolling)
• Seattle Children's Hospital — Seattle, Washington, United States (enrolling)
• Alberta Children's Hospital — Calgary, Alberta, Canada (enrolling)
• British Columbia Children's Hospital — Vancouver, British Columbia, Canada (enrolling)
• Johns Hopkins Children's Center — Baltimore, Maryland, United States

Full record on ClinicalTrials.gov

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