The Alpha-1 Foundation hosted the virtual 21st Gordon L. Snider Critical Issues Workshop entitled, Exacerbations and Pulmonary Comorbidities on Friday, January 29th and Saturday, January 30th, 2021.
Scientific meetings and conference organized by the Alpha-1 Foundation are designed to answer important questions in Alpha-1 Antitrypsin Deficiency (Alpha-1), identify new approaches, and help to establish the Foundation’s credibility as a resource for serious research. The Gordon L. Snider Critical Issues Workshops are named after the late Dr. Gordon L. Snider one of the most influential researchers in Alpha-1 Antitrypsin Deficiency. Dr. Snider not only made seminal scientific contributions which have clarified the pathogenesis of Alpha-1, but also laid the groundwork for the Foundation’s research program. In particular, he stressed the importance of encouraging young investigators to pursue a career in Alpha-1 research. The Gordon L. Snider Critical Issues Workshops are single-topic workshops that facilitate exchange between experts and answer important questions or stimulate additional investigation.
The day was divided into four sections: Pulmonary Exacerbations, Comorbidities, Morbidities and Usual COPD vs. Alpha-1 COPD. The meeting allowed researchers to exchange their findings in a collaborative forum to discuss more recent knowledge addressing issues and highlighting where real progress has been made and the role and effect of acute exacerbations and disease subtypes affecting patients’ health and outcomes. There was a wide raging audience present consisting of researchers, clinicians, patients, donors, industry, biotech, and academia bringing a total of over 300 registered attendees to this event.
“International lockdown provides unique challenges to the delivery of clinical and scientific programs. The lack of interpersonal discourse during coffee and lunch breaks provides extra time for queries and discussion. Nevertheless, we hope the current balance of science and critical clinical aspects of AATD balanced with the patients’ perspective, at least gets partway there!”- Dr. Robert Stockley
The virtual event was made possible by the hard work and dedication of the workshop’s co-chairs, Professor Robert Stockley, Dr. Alan Barker and Ms. Jean McCathern. Professor Stockley is Professor of Medicine at the University of Birmingham, he established a registry for AATD patients in the UK in 1996 and has followed patients for over 20 years. He was instrumental in establishing and chairing the Alpha-1 International Registry. Dr. Barker is Professor of Medicine, Pulmonary and Critical Care at Oregon Health and Science University, Portland. He participated as one of the investigators in the landmark NHLBI Alpha-1 Antitrypsin Registry beginning in 1988. He is one of the Alpha Docs in the Northwest. Ms. McCathern is a ZZ Alpha that was diagnosed in 2004. She has been an active part of the Alpha-1 community as a Support Group Leader, AlphaNet Coordinator and Information technology consultant for AlphaNet. Ms. McCathern has been active on the Medical and Scientific Advisory Committee since 2009. She has been a huge advocate of participating in research and has been part of numerous Alpha-1 studies over the years.
“It was great to have leading Alpha-1 and COPD investigators define and explain the importance of pulmonary setbacks or exacerbations. Such exacerbations in Alpha-1 antitrypsin deficiency are worse than in other causes of emphysema. In addition, researchers emphasized the role of Alpha-1 in liver disease and a rare skin condition (panniculitis) as well as accentuating heart disease. Two Alpha-1 patients clearly told their medical stories and emphasized the role of controlling their weight and performing some form of exercise on a regular basis.”- Dr. Alan Barker
The agenda included presentations from researchers from around the globe. A special thank you for making our program a success:
Alan F. Barker, MD- Oregon Health and Science University
Mark L. Brantly, MD– University of Florida College of Medicine
Peter Calverley, MBChB, DSc, FRCP, FRCPE, FMedSci, FERS, ATSF– University of Liverpool
Michael A. Campos, MD, FACP- University of Miami Miller School of Medicine
James Chalmers, MBChB, PhD– University of Dundee School of Medicine
Kenneth R. Chapman, MD, MSc, FRCPC, FACP, FERS- University of Toronto
Virginia Clark, MD, MS– University of Florida College of Medicine
Mohammad Dalabih, MD- National Jewish Health Denver
Noel G. McElvaney, MD, BCh, BAO, FRCPI, FRCPC- Royal College of Surgeons in Ireland
Miriam O’Day- Alpha-1 Foundation
Robert A. Sandhaus, MD, PhD, FCCP– National Jewish Health Denver
Elizabeth Sapey, BSc, MBBS, PhD, FRCP- University Hospitals Birmingham
Trishul Siddharthan, MD– University of Miami Miller School of Medicine
Don Sin, MD- University of British Columbia
Jude Samulski, PhD-University of North Carolina
Erik J. Sontheimer, PhD-University of Massachusetts Medical School
Robert Stockley, MD, DSc, FRCP, FERS– University Hospitals Birmingham
Charlie Strange, MD– Medical University of South Carolina
A special thank you to our patient presenters:
Gordon Collett- Bend, Oregon
Jean McCathern- Highspire, Pennsylvania
Heide Stagl- Beacon, New York
“This workshop about exacerbations and comorbidities hit close to home with important issues that don’t get enough attention for Alphas. It was enlightening to hear the doctors debate among themselves about certain topics, ending up agreeing to disagree. Their differences in opinions highlight why we need more research in this area.”- Jean McCathern
The Foundation is working with a scientific writer to assist with the proceedings of this workshop for future publications. Thank you to the generous sponsors for their support of the 21st GLS Workshop: AlphaNet, CSL Behring, Grifols, Takeda and Vertex.