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

Description

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.

Conditions

Pediatric Hydrocephalus

Study Overview

Study Details

Study overview

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.

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

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

Condition
Pediatric Hydrocephalus
Intervention / Treatment

-

Contacts and Locations

Birmingham

Children's Hospital of Alabama, University of Alabama, Birmingham, Alabama, United States, 35233

Los Angeles

Children's Hospital of Los Angeles, Los Angeles, California, United States, 90027

Aurora

Children's Hospital Colorado, Aurora, Colorado, United States, 80045

Baltimore

Johns Hopkins Children's Center, Baltimore, Maryland, United States, 21287

St. Louis

St. Louis Children's Hospital, St. Louis, Missouri, United States, 63110

Columbus

Nationwide Children's Hospital, Columbus, Ohio, United States, 43205

Pittsburgh

Children's Hospital of Pittsburgh of UPMC, Pittsburgh, Pennsylvania, United States, 15224

Nashville

Monroe Carell Jr. Children's Hospital at Vanderbilt, Nashville, Tennessee, United States, 37232

Houston

Texas Children's Hospital, Houston, Texas, United States, 77030

Salt Lake City

Primary Children's Hospital, Salt Lake City, Utah, United States, 84118

Participation Criteria

Researchers look for people who fit a certain description, called eligibility criteria. Some examples of these criteria are a person's general health condition or prior treatments.

For general information about clinical research, read Learn About Studies.

Eligibility Criteria

  • * 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.

Ages Eligible for Study

to 18 Years

Sexes Eligible for Study

ALL

Accepts Healthy Volunteers

No

Collaborators and Investigators

University of Utah,

Jay Riva-Cambrin, MD, STUDY_CHAIR, Alberta Children's Hospital

Abhaya Kulkarni, MD, PhD, PRINCIPAL_INVESTIGATOR, Sick Children's Hospital, Toronto, Ontario

Tamara D Simon, MD, MSPH, PRINCIPAL_INVESTIGATOR, University of Washington / Seattle Children's Hospital

Richard Holubkov, Ph.D., PRINCIPAL_INVESTIGATOR, University of Utah

Study Record Dates

2029-12