Austrian Hemophilia Registry: Design, development and set of variables;Österreichisches Hämophilie Register: Aufbau, Entwicklung und Variablensatz

Wiener Klinische Wochenschrift

Volumn 121, Issue 5-6, 2009, Pages 196-201

  Reitter, Sylvia ^a   Streif, Werner ^b   Schabetsberger, Thomas ^c   Wozak, Florian ^c   Hartl, Hubert ^a   Male, Christoph ^a   Muntean, Wolfgang ^d   Pabinger, Ingrid ^a  

^a MEDICAL UNIVERSITY OF VIENNA   (Austria)

^b INNSBRUCK MEDICAL UNIVERSITY   (Austria)

^c UNIVERSITY FOR HEALTH SCIENCES   (Austria)

^d MEDICAL UNIVERSITY OF GRAZ   (Austria)

Author keywords

Austria; Hemophilia; Quality control; Registry

Indexed keywords

ARTICLE; DATA BASE; DISEASE COURSE; DISEASE SEVERITY; DRUG INDUSTRY; HEALTH CARE COST; HEALTH CARE PLANNING; HEALTH STATUS; HEMOPHILIA; INFECTION; INFORMED CONSENT; MEDICAL INFORMATION; MEDICAL RECORD; MEDICAL SOCIETY; QUALITY CONTROL; REGISTER;

AUSTRIA; DATABASE MANAGEMENT SYSTEMS; DISEASE NOTIFICATION; HEMOPHILIA A; HUMANS; POPULATION SURVEILLANCE; PROGRAM DEVELOPMENT; REGISTRIES;

EID: 65549168424     PISSN: 00435325     EISSN: None     Source Type: Journal    
DOI: 10.1007/s00508-009-1156-0     Document Type: Article

References (21)

1. http://ec.europa.eu/health/ph-threats/non-com/rare-diseases-en.htm (site visited on 2008-11-03)
2. F Peyvandi M Spreafico 2007 Epidemiology of coagulation disorders Hematology Education: the education program for the annual congress of the European Hematology Association 1 24 30
3. EURORDIS, European Organisation for Rare Diseases, http://www.eurordis. org/article.php3?id-article=252 (site visited on 2008-11-03)
4. The Hemophilia Registry of the Italian Association of Hemophilia Centres, http://www.unipg.it/haemophilia/history.htm (site visited on 2008-11-03)
5. The Swiss Hemophilia Registry, http://www.aekreg.ch (site visited on 2008-11-03)
6. United Kingdom Haemophilia Centre Doctors' Organisation, The National Haemophilia Database, http://www.ukhcdo.org (site visited on 2008-11-03)
7. Canadian Hemophilia Registry, http://www.fhs.mcmaster.ca/chr (site visited on 2008-11-03)
8. Deutsches Hämophilieregister (DHR), http://www.pei.de/nn-163024/DE/ infos/fachkreise/dhr/dhr-node.html?-nnn=true (site visited on 2008-11-03)
9. Österreichisches Hämovigilanzregister, http://www.oebig.org/ index.php?set-language=de&cccpage=arbeitsbereiche-detail1&set-z-arbeits- bereiche-ebene2=138&set-z-arbeitsbereiche-ebene3=9999 (site visited on 2008-11-03)
10. Beschluss der Kommission vom 10. Februar 2006 über die Annahme des Arbeitsplanes 2006 für die Durchführung des Aktionsprogramms der Gemeinschaft im Bereich der öffentlichen Gesundheit (2003-2008), einschließlich Jahresarbeitsprogramm für Finanzhilfen (2006/89/EG)
11. EMEA Report of Expert Meeting on Factor VIII Products and Inhibitor Development
12. Evatt B. Guide to developing a national patient registry. World Federation of Haemophilia
13. Datenschutzgesetz 2000 (DSG 2000), BGBl. I Nr. 165/1999, http://www.dsk.gv.at/dsg2000d.htm (site visited on 2008-11-03)
14. T Schabetsberger E Ammenwerth S Andreatta G Gratl R Haux G Lechleitner 2006 From a paper-based transmission of discharge summaries to electronic communication in health care regions Int J Med Inform 75 209 215 (Pubitemid 43303852)
15. Schabetsberger T, Ammenwerth E, Breu R, Hoerbst A, Goebel G, Penz R, et al (2006) E-health approach to linkup actors in the health care system of Austria. Stud Health Technol Inform, Ubiquity: Technologies for Better Health in Aging Societies. Proceedings of MIE2006, IOS Press, 124: 415-420
16. Wozak F, Ammenwerth E, Breu M, Penz R, Schabetsberger T, Vogl R, et al (2006) Medical Data GRIDs as approach towards secure cross enterprise document sharing (based on IHE XDS). Stud Health Technol Inform, Ubiquity: Technologies for Better Health in Aging Societies. Proceedings of MIE2006, IOS Press, 124: 377-383
17. Schabetsberger T, Ammenwerth E, Goebel G, Lechleitner G, Penz R, Vogl R, et al (2005) What are functional requirements of future shared electronic health records? Engelbrecht R, Geissbuhler A, Lovis C, Mihalas G. European Notes in Medical Informatics (CD-Rom): Connecting Medical Informatics and Bio-Informatics
18. http://ehealth.umit.at/joomla/index.php?option=com-content&task= view&id=2 (site visited on 2008-11-03)
19. I Walker J Julian 1998 Causes of death in Canadians with haemophilia 1980-1995. Association of Hemophilia Clinic Directors of Canada Haemophilia 4 5 714 720
20. S Darby S Kan R Spooner P Giangrande F Hill C Hay 2007 Mortality rates, life expectancy, and causes of death in people with haemophilia A or B in the United Kingdom who were not infected with HIV Blood 110 3 815 825 (Pubitemid 47267416)
21. C Ludlam C Hay G Dolan 1997 Treatment for haemophilia by postcode BMJ 314 749 (Pubitemid 27113086)