Data Coordinating Center

Networks supported by the Data Coordinating Center DCC currently are:

The randomized study, entitled "Therapeutic Hypothermia after Pediatric Cardiac Arrest (THAPCA)" (http://thapca.org) investigates the use of therapeutic hypothermia, or lowering the body temperature, in children and infants who have experienced cardiac arrest. The use of therapeutic hypothermia in adults has proven effective in improving survival rates and prevention of brain injury in adults who experience cardiac arrest, however it has not previously been studied for children or infants who suffer cardiac arrest. THAPCA Trials investigators are evaluating the use of therapeutic hypothermia in children who arrest both in the hospital, and out of it.

The Data Coordinating Center (DCC), based at the University of Utah's School of Medicine, provides a central repository for data generated by each of the participating Clinical Centers.

The Collaborative Pediatric Critical Care Research Network (http://cpccrn.org/index.html) was established in April 2004. This essential network was created because many of the current therapies and technologies used in pediatric critical care have evolved without sufficient study or have been adopted from adult, neonatal or anesthetic practice. The research performed by CPCCRN will produce data that can be used to more effectively treat pediatric critical illness and injury patients.

The Pediatric Emergency Care Applied Research Network (http://www.pecarn.org) is the first federally-funded pediatric emergency medicine research network in the United States. The crucial research conducted by PECARN is focused on the prevention and management of acute illnesses and injuries in children and youth of all ages.

The Hydrocephalus Clinical Research Group (http://www.hcrn.org) consists of parents, brain surgeons, philanthropists and business and nonprofits experts. HCRN collaborates with multiple sites to conduct clinical research concentrated on improving the lives of children suffering from hydrocephalus. The network aims to move beyond the idea that shunts are sufficient treatment to finding a cure.

MS Network

The MS Network (http://www.usnpmsc.org) is a United States network comprised of adult and child neurologists, scientists and other research professionals whose unifying mission is to uncover the key pathogenic mechanisms underlying multiple sclerosis through the study of pediatric multiple sclerosis. Through ongoing studies, the MS Network is measuring clinical, environmental and cognitive manifestations of early onset MS and growing the largest collection of well-characterized pediatric MS cases in the world.

NMO / Guthy Jackson

The Guthy Jackson Charitable Foundation (GJCF) is committed to developing treatments for neuromyelitis optica (NMO). The DCC is assisting GJCF in the development of research projects including a patient registry, image repository and clinical studies in NMO.

Adult Hydrocephalus Research Network

The Adult Hydrocephalus Research Network is dedicated to researching the best possible treatments for adult hydrocephalus.

The Division supports a data-coordinating center (DCC) that provides data coordination and management services for a variety of national research networks. In addition to the project faculty and staff, networks are supported by an IT infrastructure, team of biostatisticians and administrative staff. The DCC provides the below:

• Provide clinical and biostatistical leadership and actively participate in development of study concepts;
• Assist with study design and finalize the statistical analysis plan;
• Format final protocols and prepare Manuals of Operation for each study;
• Provide an interactive telephone randomization system (when applicable);
• Develop and provide in-person and on-line training for project implementation;
• Maintain study-specific communication between DCC and site research coordinators;
• Develop all data collection worksheets and computer data entry systems;
• Provide on-going assistance to site research coordinators to maintain high data quality;
• Conduct on-site and remote monitoring;
• Track (and help sites prevent) protocol violations;
• Provide real-time reports of subject accrual in each study;
• Track milestones for subject capitation payments;
• Perform all interim and final data analyses for studies;
• Prepare and present reports for the Data Safety Monitoring Board (DSMB), when applicable;
• Assist with abstract and manuscript preparation; and
• Produce and disseminate public use research datasets.