Workshop: Design and Implementation of Rare Disease Research: Post-Adenovirus Infection Bronchiolitis Obliterans as an exemplar
Monday, June 30, 2025 |
8:30 AM - 6:00 PM |
Overview
Details
Research into rare childhood-onset respiratory diseases with genetic predisposition, but unknown etiology is important, as it may have long-term consequences and necessitates international collaboration. Genetics, infection and age may be risk contributors and must be carefully considered when designing studies tailored to these unique populations.
Workshop Objectives:
- To provide a comprehensive understanding of:
- Study design
- Phenotype definition
- Patient recruitment
- Data collection
- Data analysis
- Interpretation of findings
- Using bronchiolitis obliterans post-adenovirus infection as an exemplar.
- To encourage discussion and collaboration among young faculty and scientists.
The program is designed to provide a balanced mix of lectures, interactive discussions, and networking opportunities, ensuring a comprehensive and engaging experience for young faculty and scientists.
08:30-09:00: REGISTRATION
09:00-09:30: Opening Remarks
Presentation of the attendees and speakers. Introduction to the workshop objectives and the importance of studying rare respiratory disease with infant onset using PIBO as an exemplar
Eitan Kerem, Israel
09:30-11:30: Session 1: Introduction to Post Infectious Bronchiolitis Obliterans
09:30-10:00: Overview of Adenovirus Infections
Adenovirus structure, types and pathogenesis. Mechanisms of airway injury, immune response
Alejandro Colom, Argentina
10:00-10:30: Pathophysiology of Post Infectious Bronchiolitis Obliterans
Fibrosis and obliteration; cellular and molecular pathways involved, long-term sequalae; pathology; genetic basis
Inés de Mir-Messa, Spain
10:00-10:30: Diagnostic Challenges, Risk Factors, and Biomarkers
Current diagnostic tools, challenges in early detection including risk factors, challenges for measurement including pulmonary function in school-aged children, lung volume and CT scan phenotypes, and potential biomarkers for bronchiolitis obliterans
Alejandro Teper, Argentina
11:00-11:30: Coffee Break
11:30-12:30: Session 2: Research Methodology for Population-based studies
11:30-12:00: Research Methodology 1: Clinical Data Acquisition
What are the essentials to get a reliable, valid, replicable dataset for research? Preparing protocols, international collaboration considerations, phenotype definition, cases and controls for infectious disease research, ethics and patient recruitment, data and sample collection and logistics of biospecimen collection
Felix Ratjen, Canada
12:00-12:30: Research Methodology 2: Genetics and Bio-informatics for Infectious Disease research
population structure, relationship detection, genetic technologies, genome-wide analysis, association versus causation, interpretation
Lisa Strug, Canada
12:30-14:30: Working Lunch
Speakers:
Argentina: Manuel Dominguez, MD
Chile: Julio Maggiolo, MD
Israel: Elad Ben-Meir, MD
Spain: Ines de Mir-Messa, MD
Germany: Silvija Jerkic, MD
France: Julie Mazenq, MD
South Africa: Marco Zampoli, MD
Turkey: Tuğba Şismanlar Eyuboglu, MD
Canada: Natalia Escobar, MD
14:30-15:30: Session 3: Application to PIBO
14:30-15:00: Small group discussion
- All groups will discuss international considerations for:
- Recruitment
- Controls
- Ethics
- Funding
- Data sharing
15:00-15:15: Large group summary discussion
15:15-15:30: International Development Research Centre (IDRC) Program
Funding opportunities, IDRC support
Fabiano Santos, Canada
15:30-16:00: Coffee Break
16:00-16:30: PIBO Research Protocol
Presentation and discussion of the research protocol
Eitan Kerem, Israel
16:30-17:00 Panel Discussion: Research Gaps and Future Directions
An interactive discussion focusing on unresolved questions in the field, including phenotypic complexity, genetics, potential research collaborations, and funding opportunities.
All speakers
17:00-17:15 Workshop Wrap-Up and Q&A
Summary of the day’s sessions, open Q&A, and feedback from participants
All speakers
17:15-18:00 Networking Session
An opportunity for participants to network, discuss potential collaborations, and exchange ideas in an informal setting
Speakers
