Activity of the Alpha-1 Antitrypsin Deficiency Registry in Belgium

被引：5

作者：

Hutsebaut, Jacques ^{[1
]}

Janssens, Wim ^{[2
]}

Louis, Renaud ^{[3
]}

Willersinn, Frank

Stephenne, Xavier ^{[5
]}

Sokal, Etienne ^{[5
]}

Derom, Eric ^{[4
,6
]}

机构：

[1] Hop IRIS Sud, Dept Med Interne, Serv Pulmonol, B-1040 Brussels, Belgium

[2] Katholieke Univ Leuven, Univ Hosp Leuven, Dept Resp Dis, Leuven, Belgium

[3] CHU Sart Tilman, Dept Pulmonol, B-4000 Liege, Belgium

[4] Alpha Plus Asbl Vzw, Brussels, Belgium

[5] Clin Univ St Luc, Dept Pediat, Serv Gastroenterol & Hepatol Pediat, B-1200 Brussels, Belgium

[6] Univ Ghent, Ghent Univ Hosp, Dept Pulmonol, Ghent, Belgium

来源：

COPD-JOURNAL OF CHRONIC OBSTRUCTIVE PULMONARY DISEASE | 2015年 / 12卷

关键词：

alpha-1 antitrypsin deficiency; COPD; registry; ALPHA(1)-ANTITRYPSIN;

D O I：

10.3109/15412555.2015.1021916

中图分类号：

R56 [呼吸系及胸部疾病];

学科分类号：

摘要：

A Belgian alpha-1-antitrypsin (AAT) deficiency registry has been established in 2003. Currently 55 patients are included. At the same time, a working group has been set up for publishing national guidelines. In 2014, several Belgian patients founded Alpha-1 Global. We hope that the integrated activities of all the stakeholders involved in AAT deficiency will permit a high quality care for all patients suffering from this disabling disease.

引用

页码：10 / 14

页数：5

共 11 条

[1]

[Anonymous], 1997, B WORLD HEALTH ORGAN, V75, P397

[2] Simple method for α1-antitrypsin deficiency screening by use of dried blood spot specimens [J].

Costa, X ;

Jardi, R ;

Rodriguez, F ;

Miravitlles, M ;

Cotrina, M ;

Gonzalez, C ;

Pascual, C ;

Vidal, R .

EUROPEAN RESPIRATORY JOURNAL, 2000, 15 (06) :1111-1115

[3] Prevalence of a1-antitrypsin deficiency alleles PI*S and PI*Z worldwide and effective screening for each of the five phenotypic classes PI*MS, PI*MZ, PI*SS, PI*SZ, and PI*ZZ: a comprehensive review [J].

de Serres, Frederick J. ;

Blanco, Ignacio .

THERAPEUTIC ADVANCES IN RESPIRATORY DISEASE, 2012, 6 (05) :277-295

[4]

European Parliament, 2011, ALPH 1 EUR UN EXP RE

[5] Validation of a rapid, simple method to measure α1-antitrypsin in human dried blood spots [J].

Gorrini, M ;

Ferrarotti, I ;

Lupi, A ;

Bosoni, T ;

Mazzola, P ;

Scabini, R ;

Campo, I ;

Zorzetto, M ;

Novazi, F ;

Luisetti, M .

CLINICAL CHEMISTRY, 2006, 52 (05) :899-901

[6]

Kimpen J, 1990, Gene Geogr, V4, P159

[7]

SCHOOS R, 1991, CLIN CHEM, V37, P821

[8]

Stephenne X, 2014, JPGN IN PRESS

[9] Ongoing research in Europe: Alpha One International Registry (AIR) objectives and development [J].

Stockley, R. A. ;

Luisetti, M. ;

Miravitlles, M. ;

Piitulainen, E. ;

Fernandez, P. .

EUROPEAN RESPIRATORY JOURNAL, 2007, 29 (03) :582-586

[10] Augmentation therapy for alpha-1 antitrypsin deficiency: towards a personalised approach [J].

Stockley, Robert A. ;

Miravitlles, Marc ;

Vogelmeier, Claus .

ORPHANET JOURNAL OF RARE DISEASES, 2013, 8

← 1 2 →