People with 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
- Argentina
- Austria
- Brazil
- Canada
- Denmark
- Germany
- Ireland
- Italy
- Netherlands
- New Zealand
- South Africa
- Spain
- Sweden
- Switzerland
- United Kingdom
Alpha-1 Foundation Research Registry
Alpha-1 Foundation
(877) 228-7321 ext. 306
alpha1registry@alpha1.org
Alpha-1 Foundation DNA Tissue Bank
Mark L. Brantly, MD (Florida)
www.alphaone.ufl.edu
Guillermo Menga
mengag@ciudad.com.ar
Dr. Karin Schmid-Scherzer
karin.schmid@2me.wil.magwien.gv.at
Prof. Friedrich Kummer
friedrich.kummer@2me.wil.magwien.gv.at
Jose Jardim
joserjardim@yahoo.com.br
Kenneth Chapman, MD (Toronto)
www.alpha1canada.ca
Diane W. Cox, PhD (Alberta)
Tissue Bank
www.medicalgenetics.med.ualberta.ca/faculty
Asger Dirksen, MD
www.alfa-1.dk
Claus Vogelemeier, MD, Robert Bals, MD
alpha1@med.uni-marburg.de
Prof. Gerry McElvaney
gmcelvaney@rcsi.ie
Ilaria Ferarotti, PhD
Jan Stolk, MD
j.stolk.long@lumc.nl
Michael Epton, MD
crrg@chmeds.ac.nz
Gillian Ainslie, MD
gainslie@uctgsh1.uct.ac.za
Marc Miravitlles, MD, Rafael Vidal, MD
www.separ.es
Claes-Goran Lofdahl, MD, Eeva Piitulainen, MD, PhD
Prof. Dr. Erich Russi
erich.russi@dim.usz.ch
Rob Stockley, MD (Birmingham)
