On July 11, a committee of the National Academies of Sciences, Engineering, and Medicine held a workshop examining the question of what they called “Lyme infection-associated chronic illness”—or “Lyme IACI.”

It was significant on several fronts.

The committee itself is a panel of experts from various fields who are exploring the challenging question of why some people with Lyme disease continue to be sick despite treatment.

The workshop was a chance for committee members (and the public) to hear input on that topic from a variety of sources.

Below, see the videos of the day’s proceedings.

Opening Session: An Overview of Challenges in Lyme IACI Research

Welcome
KENT KESTER, Committee Chair
Former Vice President, Translational Medicine IAVI

Patient Perspective: Impact of Lyme IACI
RHISA PARERA
Patient
Writer, Director, Producer
Your Labs Are Normal

Overview: Current Status and Challenges in Research for Lyme IACI Treatment
JOHN AUCOTT
Director, Johns Hopkins Lyme Disease Clinical Research Center
Associate Professor of Medicine
Johns Hopkins University

Building on Current Progress: Reflections from the HHS Tick-borne Diseases Working Group

C. BENJAMIN BEARD
Deputy Division Director, Division of Vector-Borne Diseases
Centers for Disease Control and Prevention

1 – Opening Session from The National Academies on Vimeo.

SESSION 1: Potential Commonalities Across Other Fields and Implications for Lyme IACI

Autoimmune mechanisms of IACI
WILLIAM ROBINSON
James W. Raitt, M.D. Professor of Medicine
Stanford University

Inflammatory responses in IACI
DANIEL CLAUW
Professor of Anesthesiology; Internal Medicine (Rheumatology); and Psychiatry
Director, Chronic Pain and Fatigue Research Center
University of Michigan

Mechanisms of colonization and pathogenesis
JOHN LEONG
Edith Rivera and Hyman S. Trilling Professor and Chair of Molecular Biology and
Microbiology
Tufts University

Elucidating pathophysiology: lessons from ME/CFS
AVINDRA NATH
Senior Investigator and Clinical Director, Division of Neuroimmunology & Neurovirology
National Institute of Neurological Disorders and Stroke, NIH

2 – Session 1 from The National Academies on Vimeo.

SESSION 2: Advances in Diagnostics Research

Current diagnostic approaches and emerging technologies
CHARLES CHIU
Professor of Laboratory Medicine and Medicine
University of California, San Francisco

Challenges in diagnostics research
NANCY KLIMAS
Director, Institute for Neuro-Immune Medicine
Professor of Medicine
Nova Southeastern University

Challenges in advancing new diagnostics development
RAYMOND DATTWYLER
Professor of Pathology, Microbiology and Immunology, Medicine, and Pediatrics
New York Medical College

Challenges in regulatory considerations of new diagnostics
ELLIOT COWAN
Founder & Principal
Partners in Diagnostics

3 – Session 2 from The National Academies on Vimeo.

SESSION 3: Strategies to Improve the Applicability of Research

Patient-generated data
BETH JAWORSKI
Director of Participant Platforms
All of Us Research Program, National Institutes of Health

Patient registries and biobanks for Lyme IACI
LIZ HORN
Principal Investigator
Lyme Disease Biobank

Platform trial designs toward standardization and quality across studies
ROGER LEWIS
Investigator, The Lundquist Institute
Professor of Medicine
University of California, Los Angeles

Research trials network and data sharing
RACHELE HENDRICKS-STURRUP
Director, Real-World Evidence
Duke-Margolis Institute for Health Policy

4 – Session 3 from The National Academies on Vimeo.

SESSION 4: Bridging Opportunities and Action

Panel Discussion: patient-defined priorities for research

• Patient-centered outcomes
  LORRAINE JOHNSON
  Chief Executive Officer
  LymeDisease.org
• Patient participation in research and data collection
  WENDY ADAMS
  Research Grant Director
  Bay Area Lyme Foundation
• Bridging between funder and patient priorities
  TIMOTHY SELLATI
  Chief Scientific Officer
  Global Lyme Alliance

Funder perspective
LEITH STATES
Chief Medical Officer
Office of the Assistant Secretary for Health, HHS

Industry perspective
MATT TINDALL
Co-Founder, President and Chief Executive Officer
FlightPath Biosciences

Regulatory perspective
STACIE HUDGENS
Chief Executive Officer
Strategic Lead, Regulatory & Access
Clinical Outcomes Solutions

5 – Session 4 from The National Academies on Vimeo.

Source: The National Academies of Sciences, Engineering, and Medicine