Clinical and Testing Centers, Research Programs

Throughout the world there are recognized centers of excellence in Alpha-1 Antitrypsin Deficiency research and clinical care. At these centers researchers and clinicians with expertise in Alpha-1 Antitrypsin Deficiency provide specialized diagnosis and/or clinical care, respiratory therapy, genetic counseling and other resources for patients and their families.

Other centers are more focused on conducting research studies or clinical trials of therapies for Alpha-1, or providing specific expertise for identifying rare alleles and genotyping. In addition, these centers can provide written information on Alpha-1 for health care providers, consultation with experts in Alpha-1 Antitrypsin Deficiency or where primary physicians can refer their patients for specialty services.

Clinical Centers

North America

There are over 50 Clinical Resource Centers in North America affiliated with the Alpha-1 Foundation, the Alpha-1 International Registry or, in the case of Canada, independent centers associated with universities and teaching hospitals. For additional information or to locate a clinical center near you in North America please consult the following websites:

Europe and the Middle East

There are over 30 research and clinical centers identified in various European and Middle Eastern countries with expertise in Alpha-1 Antitrypsin Deficiency research or testing. The Alpha-1 International Registry is a consortium of registries and research centers in Europe and provides a website with contact information for individual investigators, programs and research activities. In addition, the OrphaNet and Italian Institute of Health websites both list information on a variety of rare diseases and includes information on Alpha-1 activities in Europe and the Middle East at their websites.

Testing Centers

There are only a few centers worldwide where experts go beyond the generally available blood level diagnosis of Alpha-1 Antitrypsin Deficiency to conduct genotyping, gene scanning or gene arrays. These centers can also provide the specific expertise for identification of rare alleles. These centers include Alpha-1 Foundation and Alpha-1 International Registry centers in Florida and Utah, USA, Italy and Spain.

United States

University of Florida Alpha-1 Research Program, Mark L. Brantly, MD, Director, Alpha-1 Foundation - USA
www.alphaone.ufl.edu
AAT Deficiency Detection Center, Edward J. Campbell, MD, Laboratory Director, AIR-USA
www.aatregistry.org/usa.html

Italy

Laboratorio di Biochimica e Genetica, Clinica di Malattie dell'Apparato Respiratorio, Maurizio Luisetti, MD, Director, AIR-Italy
http://aatregistry.org/Iusa.htm

Spain

Servicio de Neumología. Hospital Universitario Vall d'Hebron, Marc Miravitlles, MD and Rafael Vidal, MD, AAT Registry Coordinators, AIR-Spain
or
www.separ.es

Germany

Deutsches Alpha-Eins-Antitrypsin-Zentrum, Klinik für Innere Medizin - Schwerpunkt Pneumologie, University of Marburg, Claus Vogelmeier, MD and Robert Bals, MD, AIR-Germany
http://aatregistry.org/Gusa.htm

Research Programs

Alpha-1 research has been conducted since 1969 in Europe, North America, South America, the Caribbean, Middle East and Asia. Although many researchers have studied and published on Alpha-1 Antitrypsin Deficiency, there are several ongoing research programs that have dedicated their focus to Alpha-1 research.

These centers cultivate young investigators through ongoing academic and research training programs, conduct clinical trials of new therapies, and research studies on various aspects of Alpha-1 Antitrypsin. This includes centers in both North America and Europe affiliated with the Alpha-1 Foundation and the Alpha-1 International Registry as well as independent programs. Researchers at each academic center with a strong focus on Alpha-1 research are also listed.

United States and Canada

Baylor College of Medicine, Houston TX
Richard Sifers, PhD, Department of Pathology
N. Tony Eissa, MD, Department of Immunology
www.bcm.edu
Cincinnati Children’s Hospital and Medical Center, Cincinnati, OH
William F. Balistreri, MD, Division of Gastroenterology and Nutrition, Medical Director, Pediatric Liver Care Center
http://www.cincinnatichildrens.org/research/administration/fs/assoc/william-balistreri.htm
Bruce C. Trapnell, MD, Division of Pulmonary Biology, Director, Rare Lung Diseases Clinical Research Foundation
http://www.cincinnatichildrens.org/svc/find-professional/t/bruce-trapnell.htm
The Cleveland Clinic Foundation, Cleveland, OH
James K. Stoller, MD, MS, Department of Pulmonary and Critical Care Medicine
cms.clevelandclinic.org/ccfpulmonary
Columbia/St Luke’s Roosevelt Hospital, New York, NY
Gerald M. Turino, MD; Ed Eden, MD, James T. Mara Center for Lung Disease
www.alphaone.org/crcs/new-york
www.cumc.columbia.edu/dept/pulmonary/1HomePage/SiteHomePage.htm
Jeanine D’Armiento, MD, PhD, Division of Pulmonary and Division of Molecular Medicine
http://cpmcnet.columbia.edu/dept/medicine/BasicResearchers/DArmiento.html
Harvard University, Brigham & Women’s Hospital, Boston, MA
Edwin K. Silverman, MD, PhD, Dawn DeMeo, MD, Craig Hersch, MD, Channing Laboratory
www.brighamandwomens.org/respiratorydisorders/Faculty/SilvermanEK.aspx
www.alphaone.org/crcs/massachusetts
University of Colorado at Denver
Rubin M. Tuder, MD, Department of Pulmonary Sciences/Critical Care Medicine
http://www.uchsc.edu/cgi/bin/search.pl
Mayo Clinic, Rochester MN
Michael J. Krowka, MD, Depts. of Cardiovascular Diseases/Pulmonary Critical Care Medicine
www.mayoclinic.org/bio/10290486.html
Medical University South Carolina, Charleston SC
Charlie Strange, MD, Alpha-1 Research Program, Division of Pulmonary & Critical Care Medicine
www.musc.edu/alphaoneregistry
Adrian Reuben, MBBS, FRCP, FACG, Director of Liver Studies, Division of Gastroenterology and Hepatology
http://clinicaldepartments.musc.edu/medicine/divisions/gi/faculty/reuben.htm
Ira R. Willner, MD, Director of the Fellowship Training Program, Division of Gastroenterology and Hepatology
http://clinicaldepartments.musc.edu/medicine/divisions/gi/faculty/willner.htm
The Ohio State University
Mark D. Wewers, MD, Division of Pulmonary and Critical Care, Associate Director of the Davis Heart and Lung Research Institute
http://internalmedicine.osu.edu/pulmonary/784.cfm
National Jewish Medical and Research Center, Denver, CO
Robert A. Sandhaus, MD, PhD, Division of Pulmonary & Critical Care Medicine
www.njc.org/patient-info/progs/med/pulmonary/staff.aspx
www.alphaone.org
www.alphanet.org
Annyce S. Mayer, MD, Division of Environmental and Occupational Health Sciences
www.njc.org/patient-info/progs/med/env-occ/staff.aspx
Oregon Health Sciences University, Portland OR
Alan F. Barker, MD, Pulmonary & Critical Care Medicine
www.ohsu.edu/pccm/faculty/barker.htm
Lynn E. Oveson, RN, BSN, MN, ANP, Pulmonary & Critical Care Medicine
www.ohsu.edu/pccm/faculty/oveson.htm
St. Louis University School of Medicine, St. Louis, MO
Jeffrey M. Teckman, MD, Department of Pediatrics, Gastroenterology and Hepatology
pediatrics.slu.edu/index.phtml?page=Jeffrey%20Teckman,%20M.D&cat=faculty
University of California, Davis Medical Center, Sacramento, CA
Christopher Bowlus, MD, Mark A. Zern, MD, Division of Gastroenterology and Hepatology, Liver Transplant Center
www.ucdmc.ucdavis.edu/transplant
Carroll E. Cross, MD, Division of Pulmonary & Critical Care, Sacramento, CA
www.ucdmc.ucdavis.edu/pulmonary
University of Colorado at Denver and Health Sciences Center, Denver, CO
Ronald J. Sokol, MD, Pediatric Liver Center and Liver Transplantation Program
www.uchsc.edu/peds/faculty/bios/sokolbio.htm
Rare Liver Disease Network: rarediseasesnetwork.epi.usf.edu/clic/index.htm
Mark Yarborough, PhD, Marilyn Coors, PhD, The Center for Bioethics and the Humanities
www.coloradobioethics.org/faculty_home.html
University of Florida College of Medicine, Gainesville, FL
Mark L. Brantly, MD, Eric J. Olson, MD, Alpha-1 Research Program and Alpha-1 DNA & Tissue Bank, Division of Pulmonary & Critical Care Medicine
www.alphaone.ufl.edu
http://www.alphaone.ufl.edu/dna_tissue_bank.php
Chen Liu, MD, PhD, Dept. of Pathology, Immunology and Laboratory Medicine
http://www.pathology.ufl.edu/~liu/
Sihong Song, PhD, College of Pharmacy, Genetics Institute
www.ufgi.ufl.edu/profiles/S-Song/UFGI%20Profiles%20--%20Sihong%20Song.htm
Regino P. Gonzalez-Peralta, MD, Division of Gastroenterology and Hepatology
www.peds.ufl.edu/peds2/divisions/div_gastro.htm
University of Nebraska Medical Center, Omaha, NE
Stephen I. Rennard, MD, Pulmonary Disease Medicine
http://www.nebraskamed.com/find_physician.aspx
University of Miami School of Medicine, Miami, FL
Adam Wanner, MD, Michael Campos, MD, Division of Pulmonary and Critical Care
www.med.miami.edu/medicine/x556.xml
Eugene Schiff, MD, Division of Hepatology, Center for Liver Disease
www.med.miami.edu/medicine/x326.xml?dept=1&div=147
University of Minnesota, Minneapolis, MN
Clifford Steer, MD, Dept. of Genetics, Cell Biology and Development
www.gcd.med.umn.edu/html/faculty%20pages/steer.html
Harvey Sharp, MD, Children’s Hospital, Gastroenterology, Hepatology & Nutrition
www.uofmchildrenshospital.org/Services/Services/c_404443.asp
University of North Carolina at Chapel Hill, Chapel Hill, NC
James F. Donohue, MD, Pulmonary Medicine
www.med.unc.edu/wrkunits/3ctrpgm/cystfib/Staff/donohue.htm
University of Pittsburgh Medical Center
David Perlmutter, MD, Children’s Hospital, Department of Pediatrics
www.chp.edu/bio2/perlmutter_d.php
Stephen Strom, PhD, McGowan Institute for Regenerative Medicine
www.mirm.pitt.edu/people/bios/Strom1.asp
University of Texas Health Center at Tyler
James M. Stocks, MD, Department of Medicine, Adult Pulmonary
www.uthct.edu/resources/directory/profile.asp?id=74
David M. Coultas, MD
www.uthct.edu/resources/directory/profile.asp?id=27
University of Toronto, Toronto, Canada
Kenneth R. Chapman, MD, FRCPC, FACP, Asthma Center, Toronto Western Hospital
www.alpha1canadianregistry.com/homeEn.asp
www.uhnresearch.ca/researchers/profile.php?lookup=926
Washington University School of Medicine
Robert M. Senior, MD, Division of Pulmonary & Critical Care Medicine
http://pulmonary.wustl.edu/faculty/senior.html

Europe

Gentofte Hospital, Denmark
Asger Dirksen, MD, Pulmonary Care
www.alfa-1.dk
Hospital Clinic Barcelona, Spain
Marc Miravitlles, MD, Rafael Vidal, MD, Institut Clinic del Torax
www.separ.es
Leiden University, Netherlands
Jan Stolk, MD, Pulmonary
www.leiden.edu
Lunds Universitat, Malmo, Sweden
Claes-Goran Hofdahl, MD, Eeva Piitulainen, Dept of Medicine
www.lu.se/lund-university
Policlinico San Matteo Di Pavia, Italy
Maurizio Luisetti, MD, Laboratorio di Biochimica e Genetica, Clinica di Malattie dell'Apparato Respiratorio
scientifico.pneumonet.it/approfondimento/aat/default.html
Queen Elizabeth Hospital, University of Birmingham, Birmingham, UK
Rob Stockley, MD, Antitrypsin Deficiency Assessment and Programme for Treatment (ADAPT) Project
www.medsciences.bham.ac.uk/research
Royal College of Surgeons in Ireland, Dublin, Ireland
Professor N. Gerard McElvaney, MD, Head of Department of Medicine
http://www.rcsi.ie/researchdb/research_piprofile.jsp
Catherine Greene, PhD, Beaumont Hospital
http://www.rcsi.ie/researchdb/research_piprofile.jsp
University Hospital Ruhrlandklink, Essen, Germany
Nikolaus Konietzko, MD, PhD, Department of Thoracic Surgery
www.ruhrlandklinik.de
University of Cambridge, Cambridge, United Kingdom
Professor David Lomas, Cambridge Institute for Medical Research
www.cimr.cam.ac.uk/investigators/lomas/index.html
Professor Robin Carrell, Trinity College
www.trin.cam.ac.uk/index
University of Marburg, Marburg, Germany
Claus Vogelmeier, MD, Robert Bals, MD, Division of Pulmonary Diseases
http://www.med.uni-marburg.de/e-einrichtungen/pneumologie/personal

Additional centers of Alpha-1 research, diagnosis and clinical care exist in Australia, New Zealand, and in South Africa. For information on these sites please visit the AIR website or consult Orphanet for Alpha-1 centers in Europe, the Middle East and Africa.