PAIS Summer School Program
Program Overview
Tuesday August 25th
Theme 1: Research approaches in PAIS
In this morning session, our invited speakers will take you through the historical development of PAIS research and introduce a range of methodological approaches in the field. You will gain a clear understanding of their respective strengths, challenges, and limitations, providing a solid foundation for your own research.
9:00
40 min
Historical background on PAIS research
Prof. Jos van der Meer | Emeritus Professor and former Chairman of the Department of Internal Medicine
Radboud University Nijmengen
9:40
40 min
Cohort studies in PAIS
Kees van den Wijngaard | Senior Researcher at the Epidemiology Department
RIVM
10:20
20 min
Coffee break
10:40
40 min
Genetic research in PAIS
Cindy Boer | Assistant Professor at Deparment Internal Medicine, Genetic Laboratory
Erasmus Medical Center
11:20
40 min
Adaptive platform trials for PAIS
Janneke van de Wijgert | Professor of Epidemiology of Infectious and Immune-mediated Diseases
University Medical Center Utrecht
12:00
60 min
Lunch
Theme 2: Working effectively with patients, families, organizations and funders
How can patient participation strengthen the relevance, quality, and impact of your research? In this interactive session, you will learn why meaningful patient involvement matters, hear directly from patient experts about their experiences in research and co-creation, and explore practical tools for involving patients throughout the research process.
13:00
45 min
Invited speaker
Sophie Kemper | Patient Participation Advisor
INVOLV
13:45
45 min
Patient experiences and scientific research
What works and what does not. What makes participation valuable for both patients and researchers and we will talk about a pratical example of co-creation.
Sebastiaan Stam | Action Researcher and Advisor
Pluut & Partners
15:00
30 min
Framework and tools
You will learn to distinguish different forms of participation, define concrete actions for each phase (planning, implementation, adjustment, interpretation) and develop an initial idea. This will be supported by pratical examples, interactive methods and common pitfalls.
Sebastiaan Stam | Action Researcher and Advisor
Pluut & Partners
15:30
60 min
Interactive group assignment
Design a research approach that incorporates patient participation using a project canvas (idea, target group, phase, role, method, outcomes, risks). Both patients and organizers will support participants during this task.
Sebastiaan Stam | Action Researcher and Advisor
Pluut & Partners
16:30
60 min
Pitches and closing
The pitches will be evaluated by patients and P&P organizers based on meaningful participation, feasibilty and creativity. A price will be awarded to the best pitch.
Sebastiaan Stam | Action Researcher and Advisor
Pluut & Partners
Wednesday August 26th
Theme 3: Foundations and current challenges
8:30
45 min
A personal journey accross ME/CFS and Long COVID
Session description will follow soon.
Prof. Carmen Scheibenbogen | Professor of Immunology
Charité Universitätsmedizin Berlin
9:15
45 min
Impaired energy metabolism in ME/CFS: molecular endotypes and mechanisms
Karl will briefly summarize how we came to work in ME/CFS research, and how this changed many aspects of our research activities and focus. Next, he will give an overview of what we have done and learned about impaired energy metabolism as a possible core disease mechanism underlying ME/CFS and possibly Long COVID symptoms. This will include omics profiling and patient stratification to uncover disease heterogeneity and potential therapeutic targets.
Karl Johan Tronstad | Professor at Department of Biomedicine
University of Bergen
10:00
45 min
Autonomic dysfunction, POTS and orthostatic intolerance across post-infectious syndromes
Session description will follow soon.
Satish Raj | Professor of Cardiac Sciences
University of Calgary
10:45
15 min
Coffee break
11:00
45 min
Clinical perspectives on Immune-related pathways in ME/CFS and post-viral fatigue
Session description will follow soon.
Eva Untersmayer | Medical Specialist in Immunology & Head of Gastrointestinal Immunology Research Group | Medical University of Vienna
11:45
45 min
From Long COVID phenotypes to mechanisms and trials
Session description will follow soon.
Michael Peluso | Associate Professor of Medicine
University of San Francisco
12:30
45 min
Methodological pitfalls and translational opportunities in Long COVID and PAIS research
Session description will follow soon.
David Putrino | Professor & Director of Rehabilitation Innovation
Icahn School of Medicine at Mount Sinai
13:15
30 min
Lunch
Theme 4: Current challenges to the field: from personal thoughts to informed views
13:45
45 min
Interactive mentor roundtable with senior researchers
Continuing lunch.