Hydrocephalus Clinical Research Network Quality (HCRNq) Registry

Doctor with a baby

In 2006, the Hydrocephalus Clinical Research Network (HCRN) was created to study hydrocephalus and develop clinical research projects to improve the lives of affected children and their families. Many of the HCRN’s studies are built on established quality improvement methods, in which treatment decisions are standardized into a protocol. This strategy improves outcomes and usually reduces cost, as demonstrated in various HCRN studies.When following an HCRN protocol, sites saw a 35 percent reduction in shunt infections. If similar results were achieved across the U.S., the harmful impact of brain infection will be reduced and children, and their families, will spend less time in a hospital. Additionally, the costs savings could reach $100 million per year.

Hydrocephalus Clinical Research Network Quality (HCRNq) Registry

As a next step, the HCRN seeks to expand and study these protocols within a registry. Partnering with the NeuroPoint Alliance (NPA) will help advance this aim through the creation of the Hydrocephalus Clinical Research Network Quality (HCRNq) registry.

Participating centers within the HCRNq registry will implement HCRN protocols and focus on the essential data collection necessary for these protocols. Centers will not be expected to do the detailed data collection on the full spectrum of HCRN studies. The HCRN will continue to generate knowledge, and the HCRNq registry centers will disseminate and validate these best practices.While there are other surgical registries available, they are observational and the details of patient management are up to the individual surgeon. Members of the HCRNq registry will follow evidence-based protocols, with monitored compliance and outcomes. Sites will receive feedback regarding their results compared to national data.

The HCRNq registry can make a significant impact on hydrocephalus. Participants will be part of a quality monitoring and improvement system focused on this debilitating and expensive condition.

In the initial phase, the HCRNq registry will use common definitions across sites to establish baseline data and implement three specific HCRN protocols in a staggered fashion:

  1. Infection Prevention Protocol (IPP). Standardized HCRN protocols have demonstrated about a 35 percent reduction in infection rates for shunt surgery.
  2. Premie IVH Protocol (pIVHP). The HCRN has developed and tested a protocol for management of hydrocephalus in infants with premature intraventricular hemorrhage.
  3. Protocol for the standardized management of surgical infection to shorten hospital stay. HCRN has demonstrated significant variation in the treatment of infection. Recently, the Infectious Disease Society of America has written guidelines for this. Using the guidelines, a treatment of infection protocol (TIP) will be implemented in the HCRNq registry.

The HCRNq registry can improve the lives of children and families affected by the hydrocephalus. . Through your participation, you will be part of a quality monitoring and improvement system focused on this debilitating and expensive condition. Please join us!

Respond to the following survey questions to gauge your interest in participating in the HCRNq registry and to receive project updates.