Registries
Individuals diagnosed as Alpha-1 Antitrypsin Deficiency have the opportunity to participate in research and clinical trials in both the United States and Europe. A primary means of gathering sufficient diagnosed individuals is through enrollment in a patient registry or tissue bank. Registries exist throughout the world and can be found in the following countries:
United States
- Alpha-1 Foundation Research Registry
- Charlie Strange, MD (South Carolina)
- www.alphaoneregistry.org
- Alpha-1 Foundation DNA & Tissue Bank
- Mark L. Brantly, MD (Florida)
- www.alphaone.ufl.edu
- Alpha-1 International Registry
- Edward J. Campbell, MD (Utah)
- www.aatregistry.org/usa.html
Argentina
- Guillermo Menga
Austria
- Dr. Karin Schmid-Scherzer
- www.aatregistry.org/Austriausa.htm
- Prof. Friedrich Kummer
Brazil
- Jose Jardim
Canada
- Kenneth Chapman, MD (Toronto)
- www.alpha1canada.ca
- Diane W. Cox, PhD (Alberta)
- Tissue Bank
- www.medicalgenetics.med.ualberta.ca/faculty
Denmark
- Asger Dirksen, MD
- www.alfa-1.dk
- www.aatregistry.org/Denusa.htm
Germany
- Claus Vogelemeier, MD, Robert Bals, MD
- www.aatregistry.org/Gusa.htm
Italy
- Maurizio Luisetti, MD
- http://www.alfa1.at.org
- scientifico.pneumonet.it/approfondimento/aat
Netherlands
- Jan Stolk, MD
- www.aatregistry.org/Netherlands.html
New Zealand
- Michael Epton, MD
- www.aatregistry.org/NZusa.html
South Africa
- Gillian Ainslie, MD
- www.aatregistry.org/SAusa.html
Spain
- Marc Miravitlles, MD, Rafael Vidal, MD
- www.separ.es
- www.aatregistry.org/Spainusa.htm
Sweden
- Claes-Goran Lofdahl, MD, Eeva Piitulainen
- www.aatregistry.org/Swedusa.htm
Switzerland
- Prof. Dr. Erich Russi
- http://www.aatregistry.org/Switzusa.html
United Kingdom
- Rob Stockley, MD (Birmingham)
- www.aatregistry.org/UKusa.html
