Ongoing research in Europe

Alpha One International Registry (AIR) objectives and development

R. A. Stockley, M. Luisetti, M. Miravitlles, E. Piitulainen, P. Fernandez, J. Stolk, N. Konietzko, K. R. Chapman, A. Dirksen, J. Houtsebaut, J. Jardim, G. Menga, C. Vogelmeier, J. Zielinski, G. Ainslie, E. W. Russi, E. Campbell, M. Epton, K. Schmid, A. Krams & 3 others M. Zolubas, S. Saarelainen, J. Burdon

Research output: Contribution to journalArticle

55 Citations (Scopus)

Abstract

In 1997, the World Health Organization recommended establishing an international registry of α1-antitrypsin deficiency. The objective of the present article is to describe the organisation of an international network of registries, the Alpha One International Registry (AIR), and the processes of enrolling and entering data. By the end of 2005, the registry included individuals from 21 countries (from four continents). The inclusion criterion was either phenotypes PiZZ, PiSZ or other severely deficient variants. Demographic and clinical information have been collected by a standardised questionnaire, translated for each country. Data are transferred to the AIR database at the Dept of Respiratory Medicine, University Hospital, Malmö, Sweden, either by e-mail or via two web-enabled questionnaires in HTML. All data are merged and checked for consistency and missing values. Collection of data started in 1999 and, by September 2005, data on 2,150 individual patients (1,180 male) had been submitted. Of these, 1,855 (84%) have phenotype PiZ, 181 (8%) PiSZ and 114 (5%) other rare Pi phenotypes. The mean age at inclusion was 49.8 yrs (SD=13.3) and the majority were index cases (64.1%). The Alpha One International Registry is the largest specific α1-antitrypsin deficiency registry, fulfilling a major World Health Organization recommendation. The success related to the convergence of national registries into a common database creating a unique registry beyond geographic boundaries and encompassing α 1-antitrypsin deficiency from various ethnic groups.

Original languageEnglish
Pages (from-to)582-586
Number of pages5
JournalEuropean Respiratory Journal
Volume29
Issue number3
DOIs
Publication statusPublished - Mar 2007

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Registries
Research
Phenotype
Databases
Pulmonary Medicine
Postal Service
Ethnic Groups
Sweden
Demography

Keywords

  • Augmentation therapy
  • Chronic obstructive pulmonary disease
  • Emphysema
  • Epidemiology
  • Prevalence
  • Registries

ASJC Scopus subject areas

  • Pulmonary and Respiratory Medicine

Cite this

Stockley, R. A., Luisetti, M., Miravitlles, M., Piitulainen, E., Fernandez, P., Stolk, J., ... Burdon, J. (2007). Ongoing research in Europe: Alpha One International Registry (AIR) objectives and development. European Respiratory Journal, 29(3), 582-586. https://doi.org/10.1183/09031936.00053606

Ongoing research in Europe : Alpha One International Registry (AIR) objectives and development. / Stockley, R. A.; Luisetti, M.; Miravitlles, M.; Piitulainen, E.; Fernandez, P.; Stolk, J.; Konietzko, N.; Chapman, K. R.; Dirksen, A.; Houtsebaut, J.; Jardim, J.; Menga, G.; Vogelmeier, C.; Zielinski, J.; Ainslie, G.; Russi, E. W.; Campbell, E.; Epton, M.; Schmid, K.; Krams, A.; Zolubas, M.; Saarelainen, S.; Burdon, J.

In: European Respiratory Journal, Vol. 29, No. 3, 03.2007, p. 582-586.

Research output: Contribution to journalArticle

Stockley, RA, Luisetti, M, Miravitlles, M, Piitulainen, E, Fernandez, P, Stolk, J, Konietzko, N, Chapman, KR, Dirksen, A, Houtsebaut, J, Jardim, J, Menga, G, Vogelmeier, C, Zielinski, J, Ainslie, G, Russi, EW, Campbell, E, Epton, M, Schmid, K, Krams, A, Zolubas, M, Saarelainen, S & Burdon, J 2007, 'Ongoing research in Europe: Alpha One International Registry (AIR) objectives and development', European Respiratory Journal, vol. 29, no. 3, pp. 582-586. https://doi.org/10.1183/09031936.00053606
Stockley RA, Luisetti M, Miravitlles M, Piitulainen E, Fernandez P, Stolk J et al. Ongoing research in Europe: Alpha One International Registry (AIR) objectives and development. European Respiratory Journal. 2007 Mar;29(3):582-586. https://doi.org/10.1183/09031936.00053606
Stockley, R. A. ; Luisetti, M. ; Miravitlles, M. ; Piitulainen, E. ; Fernandez, P. ; Stolk, J. ; Konietzko, N. ; Chapman, K. R. ; Dirksen, A. ; Houtsebaut, J. ; Jardim, J. ; Menga, G. ; Vogelmeier, C. ; Zielinski, J. ; Ainslie, G. ; Russi, E. W. ; Campbell, E. ; Epton, M. ; Schmid, K. ; Krams, A. ; Zolubas, M. ; Saarelainen, S. ; Burdon, J. / Ongoing research in Europe : Alpha One International Registry (AIR) objectives and development. In: European Respiratory Journal. 2007 ; Vol. 29, No. 3. pp. 582-586.
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