German haemophilia register

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The German Haemophilia Register (DHR) has been used to record haemophilia patients in Germany since November 2009 . Since 2017 there has been a reporting obligation for treating physicians. It was initiated by the patient organization German Haemophilia Society for Combating Bleeding Diseases eV (DHG) in Hamburg , the Haemophile Interest Group (IGH) in Bonn , the Scientific Society for Thrombosis and Haemostasis Research (GTH) in Cologne and the Paul Ehrlich Institute (PEI ) - Federal Institute for Vaccines and Biomedical Medicines based in Langen . The German Haemophilia Register is operated by the Paul Ehrlich Institute.

In order to improve therapy in the treatment of hemophilia patients with factor preparations, the German Hemophilia Register records all relevant patient data for documentation and, if necessary, the annual consumption of coagulation preparations. It is a database in the form of a clinical, national patient register , taking data protection into account. Based on the patient number ( the insurance number in statutory health insurance ), the pseudonym is calculated and encrypted and stored in the German haemophilia register. No master data such as names or addresses of patients are recorded.

Since 2009, the register initially complied with the legal obligation according to §2 1 of the Transfusion Act (TFG), and became legally imposed on June 1, 2017 by the law passed in the German Bundestag to update the regulations for blood and tissue preparations and to change other regulations Transfusion Act (TFG) and in the Transfusion Act Reporting Ordinance (TFGMV). Thereafter, the medical personnel treating haemophilia are obliged to report information about people with congenital haemostasis disorders to the haemophilia registry.

statistics

Total number of all registered patients in Germany
year Hemophilia A. Hemophilia B. Willebrand-Juergens Syndrome
2008 2995 537 984
2009 3156 567 1094
2010 3400 620 1231
2011 3483 612 1659
2012 3706 711 2124
2013 3823 707 2296
2014 3991 709 3515
2015 3690 673 3930
2016 (preliminary) 2228 413 3532

See also

Web links

Individual evidence

  1. ^ Draft of a law to update the regulations for blood and tissue preparations and to amend other regulations of March 13, 2017, accessed on June 5, 2017
  2. Table 170523_for HP 2008 to 2016 for HP  ( page no longer available , search in web archivesInfo: The link was automatically marked as defective. Please check the link according to the instructions and then remove this notice. , Paul Ehrlich Institute, accessed on June 5, 2017@1@ 2Template: Dead Link / www.pei.de