UCSF Pediatric Stroke Research Center

          Pediatric hemorrhagic stroke accounts for half of incident stroke cases in children, yet basic epidemiologic factors remain understudied even within the pediatric stroke research community. Prior pediatric hemorrhagic stroke research has generally been limited to single center studies or small case series that have been underpowered to reliably examine predictors of outcome. Children have largely been excluded from prior studies regarding management strategies for treatment of brain arteriovenous malformations (bAVMs), one of the most common causes of hemorrhagic stroke in children. The lack of pediatric-specific data leaves uncertainty for best practice to treat bAVMs in children, and key management strategies for causes of pediatric hemorrhagic stroke are based on research in adults. Outcomes from bAVM treatment are not well described, with few available data in the existing literature. This lack of data limits prediction of prognosis after hemorrhagic stroke and hinders evidence-based decisions to guide treatment decisions. Finally, only a few studies report on ethnicity, geography and social determinants of outcome in children despite the large body of evidence for health disparities (preventable differences in health experienced by socially disadvantaged groups) among adults with hemorrhagic stroke.

          Project 3, Epidemiology Of Pediatric Hemorrhagic Stroke And Arteriovenous Malformations In A Multicenter, International Cohort, seeks to fill these gaps by expanding knowledge of the disease at a population level through the creation of a novel international, multicenter registry for pediatric hemorrhagic stroke and/or bAVM. We will utilize the established infrastructure of the International Pediatric Stroke Study (IPSS), a multi-national consortium of pediatric stroke investigators. Since 2003, the International Pediatric Stroke Study (IPSS) has enrolled more than 6,000 children with ischemic stroke from 30 countries on five continents. The IPSS/IPSO has identified pediatric hemorrhagic stroke as a research priority, but thus far has lacked the resources to establish a hemorrhagic stroke clinical research arm.

          In this project, we will develop a novel multi-national prospective registry of children with hemorrhagic stroke, or at risk of stroke due to bAVM, replicating the success of the IPSS with ischemic stroke research. Project 3 has the following aims:

• Aim 1: to establish an international pediatric hemorrhagic stroke registry that will allow us to examine etiologies, clinical management, and barriers to care on a global scale.
• Aim 2: to develop a toolbox of patient-centric outcome metrics that will allow us to assess post-stroke motor recovery, cognitive recovery and epilepsy in the IPSS hemorrhagic stroke cohort.
• Aim 3: to examine the variation in the treatment of bAVMs, one of the common etiologies of hemorrhagic stroke in children.

The registry, the toolbox of outcomes metrics selected, the initial cohort of children enrolled, and the network of participating investigators will be the long-standing legacy of the UCSF Center of Excellence in Hemorrhagic Stroke Research.