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  • 1
    Electronic Resource
    Electronic Resource
    How to start prophylaxis (2003)
    Oxford, UK : Blackwell Publishing Ltd
    Haemophilia 9 (2003), S. 0 
    Details
    ISSN: 1365-2516
    Source: Blackwell Publishing Journal Backfiles 1879-2005
    Topics: Medicine
    Notes: Summary.  A cohort study was performed to assess the efficacy of a gradual introduction to primary prophylaxis by peripheral vein injections. Bleeding symptoms prior to the initiation of prophylaxis and during the time from the start of home treatment were investigated. Forty-seven boys with severe haemophilia, born between 1987 and 2000, were studied. The mean age at the start of prophylaxis was 16 months and the mean age for the boys on home treatment and full prophylaxis was 30 months. Our results show that primary prophylaxis with injections in a peripheral vein is possible in most patients (83%). Even with this early start, 59% of the children had been treated with clotting factor concentrate before prophylaxis was initiated. Seventy-two percent of the boys had no symptoms from the joints or muscles in the time from initiation to full prophylaxis every second (haemophilia A) or third day (haemophilia B). None of the patients developed cerebral bleeding during this period, but one patient had an epidural bleeding as the presenting symptom of haemophilia.
    Type of Medium: Electronic Resource
    URL: http://dx.doi.org/10.1046/j.1365-2516.9.s1.16.x
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    Paper (German National Licenses)
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  • 2
    Electronic Resource
    Electronic Resource
    Consensus perspectives on prophylactic therapy for haemophilia: summary statement (2003)
    Oxford, UK : Blackwell Publishing Ltd
    Haemophilia 9 (2003), S. 0 
    Details
    ISSN: 1365-2516
    Source: Blackwell Publishing Journal Backfiles 1879-2005
    Topics: Medicine
    Notes: Summary.  Participants in an international conference on prophylactic therapy for severe haemophilia developed a consensus summary of the findings and conclusions of the conference. In the consensus, participants agreed upon revised definitions for primary and secondary prophylaxis and also made recommendations concerning the need for an international system of pharmacovigilance. Considerations on starting prophylaxis, monitoring outcomes, and individualizing treatment regimens were discussed. Several research questions were identified as needing further investigation, including when to start and when to stop prophylaxis, optimal dosing and dose interval, and methods for assessment of long-term treatment effects. Such studies should include carefully defined cohorts, validated orthopaedic and quality-of-life assessment instruments, and cost-benefit analyses.
    Type of Medium: Electronic Resource
    URL: http://dx.doi.org/10.1046/j.1365-2516.9.s1.17.x
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    Paper (German National Licenses)
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  • 3
    Electronic Resource
    Electronic Resource
    What factors should influence the dosage and interval of prophylactic treatment in patients with severe haemophilia A and B? (2001)
    Oxford UK : Blackwell Science Ltd
    Haemophilia 7 (2001), S. 0 
    Details
    ISSN: 1365-2516
    Source: Blackwell Publishing Journal Backfiles 1879-2005
    Topics: Medicine
    Notes: In order to prevent arthropathy, prophylaxis has to start at a young age before recurrent joint bleedings have taken place. The use of central venous lines has facilitated an early beginning to treatment, but due to side-effects, most European paediatricians prefer peripheral injections whenever possible. By starting primary prophylaxis at the age of 1–2 years with one injection weekly, the need for surgical implants may be reduced. In this study, only four of 34 boys born 1988–98 with severe haemophilia A or B needed a Port-a-Cath® for primary prophylaxis. Trough levels were measured in these patients and 79% showed a trough level 〈 1%, while 21% reached a level 〉 1%. Despite this, joint bleedings during 1998 were rare in both groups [0–4] and 59% of the boys with trough levels 〈 1% did not report any haemartroses during that year. Mean annual joint bleedings were the same in both groups [0.70, 0.71]. The lowest effective level of factors VIII and IX must be determined individually for each patient on primary or secondary prophylaxis.
    Type of Medium: Electronic Resource
    URL: http://dx.doi.org/10.1111/j.1365-2516.2001.00471.x
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    Paper (German National Licenses)
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  • 4
    Electronic Resource
    Electronic Resource
    Treatment of children with haemophilia in Europe: a survey of 20 centres in 16 countries (2000)
    Oxford UK : Blackwell Science Ltd
    Haemophilia 6 (2000), S. 0 
    Details
    ISSN: 1365-2516
    Source: Blackwell Publishing Journal Backfiles 1879-2005
    Topics: Medicine
    Notes: A survey was made of the current status of treatment of haemophilic boys at 20 centres in 16 European countries and includes approximately 1500 of the estimated 6500 haemophiliacs in the participating countries. Many mild haemophiliacs are not seen, or seen infrequently, at haemophilia centres and this requires study. Nine of 18 centres provide continuous prophylaxis to 80–100% of their patients, five centres provide it to 55–80% and the remaining four centres to 15–40% of the boys. The median dose given was 6240 U kg−1 year−1 (range 3120–7800). Four centres administered only recombinant concentrates to children with severe haemophilia A, while seven centres administered recombinant concentrates to 75–90% and the remaining centres to less than 50% of the boys (two centres 〈 10%). When asked for the choice of concentrate for a newly diagnosed boy with severe haemophilia A, all but one centre preferred recombinant concentrate. Most boys below 6 years received concentrates via a peripheral vein but three centres preferred a central venous line for 80–100% of the boys. Thirteen of 18 centres applied home treatment to 84–100% of the boys and the remaining five centres to 57–77% of the boys.
    Type of Medium: Electronic Resource
    URL: http://dx.doi.org/10.1046/j.1365-2516.2000.00427.x
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    Paper (German National Licenses)
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  • 5
    Electronic Resource
    Electronic Resource
    Breastfeeding does not influence the development of inhibitors in haemophilia (2002)
    Oxford, UK : Blackwell Science Ltd
    Haemophilia 8 (2002), S. 0 
    Details
    ISSN: 1365-2516
    Source: Blackwell Publishing Journal Backfiles 1879-2005
    Topics: Medicine
    Notes: Summary.  Our aim was to test the hypothesis that breastfeeding may reduce development of inhibitors in male infants with haemophilia by inducing an oral immune tolerance to factor VIII. To achieve that goal, we performed a structured epidemiological survey comprising all males born with severe haemophilia A (in all 100 patients, 19 with inhibitors) or haemophilia B (in all 16 patients, six with inhibitors) in Sweden in 1980–99. Our results show no protective effect of breastfeeding.
    Type of Medium: Electronic Resource
    URL: http://dx.doi.org/10.1046/j.1365-2516.2002.00655.x
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    Paper (German National Licenses)
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  • 6
    Electronic Resource
    Electronic Resource
    An approach to study the viral safety of plasma-derived products in previously treated, non-infected patients (2001)
    Oxford UK : Blackwell Science Ltd
    Haemophilia 7 (2001), S. 0 
    Details
    ISSN: 1365-2516
    Source: Blackwell Publishing Journal Backfiles 1879-2005
    Topics: Medicine
    Notes: Using the polymerase chain reaction (PCR), we designed a study concept to evaluate the safety of plasma derivatives in previously treated patients who are non-infected by the specific viruses studied. Several product lots can be studied in a single patient, with a study period for each lot of 3 months. In the present study 19 patients were included for treatment with Baxter Hyland Immuno’s PCR-screened factor VIII concentrate Immunate (n=7), factor IX concentrate Immunine (n=10), the by-passing agent FEIBA plus Immunine (n=1), and the protein C concentrate Ceprotin (n=1). PCR testing for hepatitis B, C or HIV genomic material in patient samples was done as well as serological testing. All patients remained negative for the tested markers. All seven Immunate patients completed three treatment periods with three different lots of the study drug. The median study period was 282 days and the median dose 115 000 units, with a median of 115 exposure days. Five of the 10 Immunine patients completed three treatment periods and four patients, two treatment periods. One Immunine patient was discontinued from the study for reasons unrelated to the study drug administration. The median study period was 305 days and the median total dose 82 200 units, with a median of 88 exposure days. Our study presents a new design to approach the evaluation of viral safety of new plasma derivatives in previously treated, non-infected patients (NIPs) and offers several advantages over the currently recommended studies using testing for serological markers of infection in previously untreated patients (PUPs).
    Type of Medium: Electronic Resource
    URL: http://dx.doi.org/10.1111/j.1365-2516.2001.00522.x
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  • 7
    Electronic Resource
    Electronic Resource
    Physical therapy and imaging outcome measures in a haemophilia population treated with factor prophylaxis: current status and future directions (2004)
    Oxford, UK : Blackwell Publishing Ltd
    Haemophilia 10 (2004), S. 0 
    Details
    ISSN: 1365-2516
    Source: Blackwell Publishing Journal Backfiles 1879-2005
    Topics: Medicine
    Notes: Summary.  Routine infusions of factor VIII to prevent bleeding, known as prophylaxis, and other intensive therapies are being more broadly applied to patients with haemophilia. These therapies differ widely in replacement product usage, cost, frequency of venous access and parental effort. In order to address residual issues relating to recommendations, implementation, and evaluations of prophylaxis therapy in persons with haemophila, a multinational working group was formed and called the International Prophylaxis Study Group (IPSG). The group was comprised of haemophilia treaters actively involved in studies of prophylaxis from North America and Europe. Two expert committees, the Physical Therapy (PT) Working Group and the Magnetic Resonance Imaging (MRI) Working Group were organized to critically assess existing tools for assessment of joint outcome. These two committees independently concluded that the WFH Physical Examination Scale (WFH PE Scale) and the WFH X-ray Scale (WFH XR Scale) were inadequately sensitive to detect early changes in joints. New scales were developed based on suggested modifications of the existing scales and called the Haemophilia Joint Health Score (HJHS) and the International MRI Scales. The new scales were piloted. Concordance was measured by the intra-class correlation coefficient of variation. Reliability of the HJHS was excellent with an inter-observer co-efficient of 0.83 and a test-retest value of 0.89. The MRI study was conducted using both Denver and European scoring approaches; inter-reader reliability using the two approaches was 0.88 and 0.87; test-retest reliability was 0.92 and 0.93. These new PT and MRI scales promise to improve outcome assessment in children on early preventive treatment regimens.
    Type of Medium: Electronic Resource
    URL: http://dx.doi.org/10.1111/j.1365-2516.2004.00978.x
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    Paper (German National Licenses)
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  • 8
    Electronic Resource
    Electronic Resource
    Towards the goal of prophylaxis: experience and treatment strategies from Sweden, France and Hungary (2004)
    Oxford, UK : Blackwell Publishing Ltd
    Haemophilia 10 (2004), S. 0 
    Details
    ISSN: 1365-2516
    Source: Blackwell Publishing Journal Backfiles 1879-2005
    Topics: Medicine
    Notes: Summary.  The only form of haemophilia treatment that is able to prevent arthropathy and other consequences of bleeding symptoms in patients with severe haemophilia is prophylaxis started at an early age (primary prophylaxis). It is also highly beneficial for the psychological and social wellbeing of patients and their families. Scientific institutions and international organizations such as WHO, the World Federation of Hemophilia (WFH) and the National Haemophilia Foundation (NHF) have recommended that prophylaxis be considered optimum therapy. This paper discusses the barriers to prophylaxis, such as the perceived need, costs and availability, and difficulty of venous access, and describes the authors' experiences with the therapy.
    Type of Medium: Electronic Resource
    URL: http://dx.doi.org/10.1111/j.1365-2516.2004.00987.x
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    Paper (German National Licenses)
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  • 9
    Electronic Resource
    Electronic Resource
    Factor IX inhibitors and anaphylaxis in hemophilia B. (1997)
    Oxford, UK : Blackwell Science Ltd
    Haemophilia 3 (1997), S. 0 
    Details
    ISSN: 1365-2516
    Source: Blackwell Publishing Journal Backfiles 1879-2005
    Topics: Medicine
    Type of Medium: Electronic Resource
    URL: http://dx.doi.org/10.1046/j.1365-2516.1997.t01-2-00125.x
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    Paper (German National Licenses)
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  • 10
    Electronic Resource
    Electronic Resource
    Acquired von Willebrand disease (1999)
    Oxford, UK : Blackwell Science Ltd
    Haemophilia 5 (1999), S. 0 
    Details
    ISSN: 1365-2516
    Source: Blackwell Publishing Journal Backfiles 1879-2005
    Topics: Medicine
    Notes: Acquired von Willebrand disease (AvWD) is a syndrome that has clinical and laboratory features similar to hereditary vWD. In contrast to the latter it occurs in patients without a family history of previous bleeding tendency.
    Type of Medium: Electronic Resource
    URL: http://dx.doi.org/10.1046/j.1365-2516.1999.0050s2068.x
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    Paper (German National Licenses)
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