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Haemophilia care
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Theological Essays in the 500th Anniversary Year of the Reformation
[Text is in German.] "Von dort wird er kommen zu richten die Lebenden und die Toten." - Waehrend diese Worte im Glaubensbekenntnis jeden Sonntag gesprochen werden, wird darauf in der Predigt nur aeusserst selten ausdruecklich Bezug genommen. Viele Prediger scheinen dem Thema eher auszuweichen. Die vorliegende Studie untersucht anhand von im Internet publizierten Predigten aus den letzten zwoelf Jahren, welche Motive und welche Schwierigkeiten von Predigern mit dieser Thematik erkennbar sind. In einem Schlussteil werden moegliche Schritte einer angemessenen Rede vom Juengsten Gericht aufgezeigt. Prof. Dr. Heye Heyen, geb. 1953, ist Inhaber des Lehrstuhls fuer Praktische Theologie an der Fakul...
Electronic Diaries in the Management of Haemophilia Gene Therapy: Perspective of an Expert Group from the German, Austrian and Swiss Society on Thrombosis and Haemostasis (GTH)
Gene therapy (GT) is becoming a realistic treatment option for patients with haemophilia. Outside clinical trials, the complexity and potential complications of GT will pose unprecedented challenges to haemophilia care centres.AIM: To explore the potential use of electronic tools to improve the delivery of GT under real-world conditions.METHODS: Considering the hub-and-spoke model, the GTH working group on GT considered the entire patient pathway and reached consensus on requirements for an integrative software tool to secure documenting and sharing information between treaters, pharmacies and patients.RESULTS: Six steps of the gene therapy process were identified, each requiring completion ...
Familial Multiple Coagulation Factor Deficiencies (FMCFDs) in a Large Cohort of Patients - a Single-center Experience in Genetic Diagnosis
Abstract: Background: Familial multiple coagulation factor deficiencies (FMCFDs) are a group of inherited hemostatic disorders with the simultaneous reduction of plasma activity of at least two coagulation factors. As consequence, the type and severity of symptoms and the management of bleeding/thrombotic episodes vary among patients. The aim of this study was to identify the underlying genetic defect in patients with FMCFDs. Methods: Activity levels were collected from the largest cohort of laboratory-diagnosed FMCFD patients described so far. Genetic analysis was performed using next-generation sequencing. Results: In total, 52 FMCFDs resulted from coincidental co-inheritance of single-fac...
1671-1672
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1671-1672
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