In 2003, Dr. Gabrielle DeVeber at the Hospital for Sick Children, obtained a grant from the Child Neurology Society/Child Neurology Foundation to establish the International Pediatric Stroke Study (IPSS) as the first international pediatric stroke registry. An initial group of about 20 investigators from Canada, the U.S., the U.K. and Australia developed data collection forms for neonatal and childhood arterial ischemic stroke and venous sinus thrombosis. A Canadian philanthropic foundation provided support to HSC to create and maintain an on-line database, and investigators began prospective enrollment into the registry.
2003 – 2018
Over next 15 years, the IPSS grew into a multi-national network of more than 150 investigators from 102 centers across 34 countries. It developed an organizational structure including Executive and Publications Committees, and detailed Publications and Ancillary Study Policies. By 2019, these investigators enrolled nearly 6,000 pediatric stroke patients and published 30 papers.. They obtained research grants to run multicenter studies through the IPSS network: NIH grants for the multicenter Vascular effects of Infection in Pediatric Stroke Studies (VIPS I and VIPS II), and Pediatric Epilepsy Research Foundation grants for the Seizures in Pediatric Stroke Studies (SIPS I and SIPS II).
In 2018, the IPSS Executive Committee decided to form a non-profit organization (501c3), the International Pediatric Stroke Organization (IPSO). This would make the group sustainable and allow it to broaden its mission beyond research into education and advocacy for children with stroke.
The International Pediatric Stroke Organization, IPSO, was founded and incorporated as a non-profit in February 2019. Our first steps were to form a Board of Directors to establish a basic organizational structure and to engage a society & conference management company to develop the IPSO website and plan IPSO’s first international meeting: the IPSO Founding Members Congress. After the IPSO incorporation, we began weekly operational meetings of the IPSO officers and administrative staff. We developed a detailed IPSO business plan that Dr. Fullerton, IPSO President, successfully pitched to a private foundation in Dallas, the Pediatric Epilepsy Foundation (PERF), in May 2019. We received a 2-year grant from PERF, with a promise to consider an additional two years of funding if we meet the milestones specified in the plan.
In May 2019, we launched the IPSO website and invited volunteers to join the IPSO working group. We received a robust response to this call for volunteers: 237 medical professionals from 36 countries signed up on-line to participate in the IPSO Working Group. We solicited the input of the working group through a series of on-line surveys. With that input, we drafted the IPSO Charter outlining IPSO’s organizational structure, governance and subcommittee details, and developed the program for the IPSO Founding Members’ Congress
October 2019 to February 2020
In October 2019, we formally opened enrollment for IPSO membership and announced that the first annual IPSO Founding Members’ Congress would be held May 11th and 12th, 2020 in Vienna, Austria. We planned to ratify the IPSO Congress and formally launch the organization at that meeting. We worked with the conference management company, Podium Conference Management and Association Specialist, to help secure a venue, hotel block and dinner event; manage membership and registration; and guide us with the complexity of managing a professional organization. Congress registration opened in October 2019 and we had > 80 registrants by February 2020, before COVID-19 concerns slowed registration. We developed a 2-day program including business meetings, scientific sessions, and abstract presentations. We planned committee and working group breakout sessions. We confirmed 32 international speakers for an array of topics. We received and reviewed 67 abstract submissions, selecting a subset for oral presentation while inviting the other to present in poster format.
Due to the COVID-19 pandemic, we had to cancel the May 2020 Congress; for now, we have officially postponed to July 2021 in Vienna, Austria. We were able to keep the same venue and hotel block. Our registrants are either transferring their registration fees or requesting reimbursements. As of now, 65 of the registrants asked to transfer their registration fees to 2021. We decided to extend the Congress in 2021 to three days since we received such a large number of abstract submission and attendees.
We began to engage IPSO members through social media channels and newsletters. We created a Twitter account, Facebook page and LinkedIn page to post about IPSO with our community. May is “pediatric stroke awareness month,” so we increased our engagement on these platforms and introduced the IPSO blog in May 2020. We launched the blog with a post about pediatric stroke and covid-19 and are looking forward to posting more blog posts soon. We also launched IPSO’s research page and asked members to share their research studies, so we could post them on our website. This searchable page will facilitate collaborative research through our member community.
Due to COVID-19, we modified the IPSO two-year goals. We formed 2 committees and 2 working groups: Communications Committee, Education Committee, Pediatric Stroke Readiness Working Group and Charter Working Group. Currently, the Executive Committee has selected the members ensuring that each group is composed of international and multi-disciplinary representation. One of our first goals to develop pediatric stroke guidelines and educational materials for medical providers and patients’ families. We believe IPSO is filling a critical void by taking a multidisciplinary approach to a rare disease that remains poorly understood. Where scientific evidence specific to pediatric stroke is lacking, the new collaboration allows international specialists to build consensus-based guidelines on the use of adult stroke interventions – such as new devices for removing blood clots and other emerging technologies – to treat a pediatric population.
We sent out the first IPSO newsletter to our members. IPSO plans to send out quarterly newsletters to provide updates to our members. The first newsletter specifically discussed membership updates, committee updates and included a survey request. In the newsletter, we announced we are forming a new committee and working group: Community Engagement and Advocacy Committee and Hemorrhagic Pediatric Stroke Working Group.