Pediatric Stroke Research Project: How You Can Help

Published on in Stroke Notes

Many of the research projects conducted by members of CHOP’s Pediatric Stroke Program are possible thanks to the families who have agreed to participate. We need your help!

Rebecca Ichord, MD, and Lori Billinghurst, MD, are interested in developing a research project that helps to improve outcomes after pediatric stroke. They would like to submit a proposal to the Patient-Centered Outcomes Research Institute (PCORI) for project funding.

The PCORI actively engages “stakeholders”— that means you! — in research, from study inception (what to study) through to completion and dissemination of the results.

We are interested in hearing from families who are interested in helping us develop a PCORI project. At the start, this might include things like completing an online questionnaire and participating in a parent focus group to help us better understand the questions you have about your child’s stroke and her future. 

If you’re interested in participating, please send an email to Laura Jastrzab at pediatricstroke@email.chop.edu with your name, your child’s name and your contact details. Alternately, Laura may be reached by telephone at 267-426-7332.

We thank you in advance, and would like to extend our appreciation to other families who have participated in the following research projects:

  • Dr. Ichord, Dr. Billinghurst and Dan Licht, MD, would like to thank all families who have agreed to participate in the CHOP Stroke Registry Research Project. Since 2006, this project has registered more than 500 children with stroke and has provided physicians and researchers with critical information about how often stroke occurs, what the risk factors are, how stroke can be diagnosed more quickly, and what treatments and rehabilitation strategies can be used to result in the best outcomes for infants and children. Recent work has examined the frequency of and factors that relate to seizures and epilepsy after stroke at birth and stroke in older infants and children.
  • Lauren Krivitzky, PhD, CHOP stroke neuropsychologist, and PhD candidate Danielle Bosenbark, would also like to thank the 41 children and families who participated in Danielle’s PhD dissertation project entitled, Attention and Executive Functioning Profiles in Children Following Perinatal Arterial Ischemic Stroke. The goal of this study was to help us better understand the thinking and behavioral challenges that some children face after experiencing a stroke at birth. We hope that this study will enable parents, educators and physicians to identify challenges earlier and develop better management strategies. Danielle is defending her thesis in June, 2015 and we wish her the best of luck!