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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

(Participation is free of charge, but prior registration is required)


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:
    1. Study design
    2. Phenotype definition
    3. Patient recruitment 
    4. Data collection
    5. Data analysis
    6. Interpretation of findings
    7. Using bronchiolitis obliterans post-adenovirus infection as an exemplar.
    8. 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

Elad Ben-Meir
Hadassah Medical Center

Ines De Mir Messa
Hospital Universitari Vall d'Hebron

Manuel Dominguez Monclá
Fellow
Hospital de Niños Ricardo Gutierrez

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Alejandro Escobar Solarte
Student
Icesi

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Julio Maggiolo
Médico Tratante
Hospital Exequiel González Cortés

Tuğba Şişmanlar Eyüboğlu
Gazi University Faculty of Medicine Department of Pediatric Pulmonology

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Marco Zampoli
Associate Professor
University of Cape Town

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