IPSS Overview

The International Paediatric Stroke Study (IPSS) serves as the global data and imaging core for multi-disciplinary paediatric experts who perform international collaborative research in an effort to better understand, prevent, and improve outcomes in paediatric stroke.

Established in 2003 under the leadership of Dr. deVeber as a multi-centre, multi-national clinical research registry, IPSS has since grown to become a highly successful study vehicle for paediatric stroke research across over 100 institutions worldwide. The robust dataset and cohesive network enable high caliber and ground-breaking research in the field.

Following Dr. deVeber’s retirement in April 2018, Dr. Noma Dlamini, Director of the Paediatric Stroke Program at SickKids, became the Scientific Director of the IPSS.

In February 2019, the scope of the IPSS officially expanded alongside The International Pediatric Stroke Organization (IPSO) under leadership of Drs Noma Dlamini, Heather Fullerton (San Francisco), Adam Kirton (Alberta) and Lori Jordan (Nashville). There was a need for infrastructure and network sustainability due to the attractive platforms and expanding research interests.

The IPSS will continue to serve as the data and imaging platform for paediatric stroke researchers worldwide, synchronizing Investigator efforts with IPSO to identify and support existing and new research initiatives to facilitate opportunities for scientific productivity.

IPSS Mission Statement

• To perform international collaborative research aimed at understanding, preventing, and improving outcomes in paediatric stroke.
• To provide opportunities for paediatric stroke specialists to participate and contribute to ongoing stroke research.
• To serve a network of multi-disciplinary paediatric stroke investigators by providing the infrastructure for rigorous clinical, imaging, and translational research.
• To support IPSO, families, and children by providing data that can be used for professional and public education.

IPSS Objectives

• To develop an integrated platform of clinical databases so as to collect high-quality, multi-centre paediatric stroke data in a prospective, consecutive cohort.
• To develop and conduct multi-centre population-based studies, natural history studies, and clinical trials to improve the care of children with stroke.
• To serve as the infrastructure for investigator-initiated grants.

Specific Objectives

1. A. To continue to ascertain the numbers of newborns and children with arterial ischemic stroke (AIS) and cerebral sinovenous thrombosis (CSVT), their risk factors, current treatments and outcomes and update the standardized data collection forms.
   B. To ascertain the numbers of newborns and children with haemorrhagic stroke (incl. vascular malformations i.e. AVM), their risk factors, current treatments and outcomes and develop standardized data collection forms
2. To develop an integrated clinical neuroimaging database
3. To develop a genomics platform
4. To develop standardized protocols for
   1. diagnosis,
   2. investigation of risk factors
   3. outcome assessment, and
   4. hyper-acute, acute and rehabilitation therapies for neonates and children with AIS, CSVT and hemorrhagic stroke
5. Obtain grant funding to support and conduct investigator-initiated and hypothesis-driven multi-centre IPSS sub-studies
6. Engage parent groups through parent-reported patient enrollment (modified, accessible form)

IPSS Organizational Structure

Interested in getting involved or leveraging the IPSS dataset for a research project?

Contact IPSS Central to learn about the policies and procedures around data ownership, use and access, and more!

Funding