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  • 1
    ISSN: 1365-2516
    Source: Blackwell Publishing Journal Backfiles 1879-2005
    Topics: Medicine
    Notes: The safety and efficacy of adjusted continuous infusion (CI) of recombinant factor IX (FIX; BeneFix®) was assessed in vitro and in a clinical study. BeneFix® was reconstituted at 100 IU mL−1 with or without unfractionated heparin (4 U mL−1) and stored at either 4 °C or room temperature. Reconstituted BeneFix® retained at least 90% activity over 14 days if stored at 4 °C but stability was reduced at room temperature. BeneFix® reconstituted in a sterile pharmacy was free of bacterial contamination. Six patients with haemophilia B received seven CIs of BeneFix® to cover routine surgery and severe bleeding episodes. The CIs lasted between 3 and 10 days. In all cases, haemostasis was excellent and the desired therapeutic FIX level was easily maintained. No thrombotic episodes or inhibitor development occurred but two patients developed thrombophlebitis at the infusion site when heparin was not added to the infusion. BeneFix® is not currently licensed for CI and we suggest that studies to enable licensing should be established as soon as possible.
    Type of Medium: Electronic Resource
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  • 2
    ISSN: 1365-2516
    Source: Blackwell Publishing Journal Backfiles 1879-2005
    Topics: Medicine
    Notes: Summary.  Communication between patients and haemophilia centres is important in the management of the disease. Traditionally this has been done by paper records which give retrospective and often incomplete data. This paper describes the development and pilot study of a novel Internet-based electronic patient treatment log. The advantages of the system include up to date information available to the haemophilia centre, less data entry, better quality records and an individualized alert system for significant events. The system was tested with ten patients at three UK haemophilia centres and found to be feasible and easy to use. In the opinion of the patients and health care professionals involved in the pilot study, the system improves quality, accuracy, accessibility and usefulness of patient generated data. Development of the system is ongoing and its use extended to other haemophilia centres.
    Type of Medium: Electronic Resource
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