Pediatric Hemorrhagic Stroke Registry
Photo Credit: Helen Carlson, Ph.D, Alberta Children’s Hospital
Pediatric Hemorrhagic Stroke Registry
IPSO collaborated with the University of California, San Francisco on a research proposal to study the pediatric hemorrhagic stroke and brain arteriovenous malformations (bAVMs) population. UCSF was awarded as a Hemorrhagic Stroke Center of Excellence by the American Heart Association-Bugher Foundation. UCSF is leading three projects under the guidance of Center Director and IPSO President, Dr. Heather Fullerton, and project Principal Investigators, Dr. Helen Kim (Project 1), Dr. Jarod Roland (Project 2), Dr. Christine Fox and Dr. Noma Dlamini (Project 3).
The goal of this study is to gather information that will help each individual child born with a brain AVM have the best outcome. Project 1 will analyze images of the brain and blood tests in order to help predict dangerous changes to an AVM. Project 2 will use imaging to map out brain networks around AVMs to help preserve those networks—and hence brain functions—during AVM treatment. Project 3 will build upon the International Pediatric Stroke Study – where more than 6,000 children with ischemic stroke have participated. Project 3 will start a new registry for children with brain AVMs and hemorrhagic stroke. This registry will help doctors and researchers around the world understand demographic and social determinants of hemorrhagic stroke treatment and outcome, such as, the impact of race, education, and where a child lives. As a final aim, all the project results will be used to develop a decision tree to guide the care of brain AVMs in children.
The IPSO Pediatric Hemorrhagic Stroke Working Group will help develop the new registry under Project 3 and help disseminate the research and results discovered through this study.
About Project 3
Project 3, Epidemiology Of Pediatric Hemorrhagic Stroke And Arteriovenous Malformations In A Multicenter, International Cohort, will collaborate with the IPSO and IPSS by utilizing their international networks and infrastructures to develop a pediatric hemorrhagic stroke working group. Researchers will examine the epidemiology of pediatric hemorrhagic stroke, with a particular focus on epidemiology and health disparities based on race/ethnicity, geography and socioeconomics. Researchers will also collect longitudinal outcomes and work with collaborating investigators in physical and occupational therapy to develop improved outcome measures. This project will enroll a large number of children across the world and broaden the understanding of pediatric hemorrhagic stroke at a population level.
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.
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.