The AMDA is hosting a webinar, Tuesday, March 25, 2025 at 11 AM CT / 12 PM ET with an update on the IPA/Erasmus MC Pompe Survey presented by Lauren Dobischok and Michelle Kruijshaar from Erasmus Medical Center, in Rotterdam, the Netherlands. With second-generation ERT entering the market and other novel therapies on the horizon, insights from patients’ perspectives are more relevant than ever.
In this webinar, you will learn about the history of the Pompe Survey, key findings from the survey, and the continued importance of patient participation in achieving future goals. There will be a Q&A session following the presentation.
Webinar Overview
Launched in 2002, the IPA/Erasmus MC Pompe Survey collects information on the impacts of Pompe disease on patients’ lives, and how these impacts may change with treatment. Pompe patients from around the world provide this information through an annual questionnaire. The information collected in the Pompe Survey provides insights on the effect of different treatments and particular issues that Pompe patients may face in daily life. With second-generation ERT entering the market and other novel therapies on the horizon, insights from patients’ perspectives are more relevant than ever. Learn about the history of the Pompe Survey, key findings from the survey, and the continued importance of patient participation in achieving future goals in this webinar.
Speaker Biographies
Lauren Dobischok, MSc
Lauren Dobischok is the coordinator of the Pompe Survey at Erasmus Medical Center in Rotterdam, the Netherlands. She received her BSc in Health Sciences with a concentration in Population and Quantitative Health from Simon Fraser University in 2020 and her MSc in Epidemiology from the Netherlands Institute for Health Sciences in 2022. Lauren works closely with representatives from Pompe patient organizations around the world to maintain and expand the Pompe Survey, with the aim of creating an international network of patients whose perspectives inform future research. She is passionate about community-engaged research and hopes to connect and empower people living with Pompe disease through their participation in the survey.
Michelle Kruijshaar, PhD
Michelle Kruijshaar is a senior scientist (epidemiologist) at Erasmus MC, Rotterdam. In 2012 she joined the center for Lysosomal and Metabolic Disorders (CLMD), where her work has focused on investigating the effects of enzyme replacement therapy, in patients with Pompe disease. Two key cohort studies at Erasmus MC are the basis for this work: the Dutch Pompe registry and the International Pompe Survey.
Michelle studied medical biology in Amsterdam and has a master’s degree in epidemiology from the Netherlands Institute for Health Sciences in Rotterdam. In 2004 she obtained a PhD for her research on summary measures of population health from the department of Public Health of the Erasmus MC.