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Haemophilia: the Official Journal of the World Federation of Hemophilia

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https://www.readbyqxmd.com/read/30004625/recombinant-activated-factor-vii-in-approved-indications-update-on-safety
#1
LETTER
E J Neufeld, C Négrier, S Benchikh El Fegoun, D L Cooper, A Rojas-Rios, S Seremetis
No abstract text is available yet for this article.
July 13, 2018: Haemophilia: the Official Journal of the World Federation of Hemophilia
https://www.readbyqxmd.com/read/30004622/haemophilia-clinical-care-and-research-needs-assessing-priorities
#2
LETTER
P Chowdary, P Angchaisuksiri, J Dimsits, A Iorio, K Kavakli, S R Lentz, J Mahlangu, A McCarthy, C Kessler
No abstract text is available yet for this article.
July 13, 2018: Haemophilia: the Official Journal of the World Federation of Hemophilia
https://www.readbyqxmd.com/read/30004621/comment-on-interpreting-data-on-inhibitor-development-from-previously-untreated-patient-studies-beware-of-premature-conclusions
#3
LETTER
Dr R J Liesner
No abstract text is available yet for this article.
July 13, 2018: Haemophilia: the Official Journal of the World Federation of Hemophilia
https://www.readbyqxmd.com/read/30004620/emotional-distress-in-haemophilia-factors-associated-with-the-presence-of-anxiety-and-depression-symptoms-among-adults
#4
P R Pinto, A C Paredes, P Moreira, S Fernandes, M Lopes, M Carvalho, A Almeida
INTRODUCTION: Haemophilia is related to several clinical and psychosocial challenges that have been associated with increased emotional distress. These may impact on disease adjustment and health outcomes, reinforcing the attention given to psychosocial health of people with haemophilia (PWH), in the scope of optimal comprehensive care. AIM: To identify potentially modifiable factors associated with the presence of anxiety and depression symptoms among adult PWH...
July 13, 2018: Haemophilia: the Official Journal of the World Federation of Hemophilia
https://www.readbyqxmd.com/read/30004619/validation-of-the-haemophilia-exercise-project-test-questionnaire-hep-test-q-an-instrument-for-the-assessment-of-subjective-physical-functioning-in-children-with-haemophilia
#5
S von Mackensen, T Hilberg, L A Valentino, K Kurnik, K Khair
INTRODUCTION: Contemporary haemophilia management recommends sport and physical activity in children with haemophilia. Assessment of subjective physical functioning requires standardized and validated instruments. AIMS: To adapt and psychometrically test the adult Haemophilia & Exercise Project-Test-Questionnaire (HEP-Test-Q) for children (aged 6-17 years). METHODS: In discussion rounds with children, single items of the adult HEP-Test-Q were reformulated to make them understandable without changing the item concept...
July 13, 2018: Haemophilia: the Official Journal of the World Federation of Hemophilia
https://www.readbyqxmd.com/read/30004617/the-immunogenicity-of-refacto-af-moroctocog-alfa-af-cc-in-previously-untreated-patients-with-haemophilia-a-in-the-united-kingdom
#6
M C Mathias, P W Collins, B P Palmer, E Chalmers, J Alamelu, M Richards, A Will, C R M Hay
INTRODUCTION: Factor VIII inhibitor development is currently the most serious complication of the treatment of haemophilia A. Differences in manufacturing and the molecular structure of brands of recombinant factor VIII have led to speculation that concentrates may differ in immunogenicity. This has led to a regulatory focus on the immunogenicity of factor VIII concentrates both before and after licensure. AIM: To investigate the immunogenicity of ReFacto AF post licensure in a real-world setting in previously untreated patients (PUPs) treated exclusively with this product until at least 50 exposure days (EDs)...
July 13, 2018: Haemophilia: the Official Journal of the World Federation of Hemophilia
https://www.readbyqxmd.com/read/30004613/long-term-outcomes-from-prophylactic-or-episodic-treatment-of-haemophilia-a-a-systematic-review
#7
REVIEW
J O'Hara, C S Sima, J Frimpter, F Paliargues, P Chu, I Presch
INTRODUCTION: Evaluating treatment success in patients with haemophilia A (HA) remains a vigorous debate, especially concerning the interpretation of results from clinical and observational research. The benefits of short-term prophylaxis are well established, but long-term outcomes, particularly related to humanistic and economic burden, are not as well understood. AIM: We conducted a systematic literature review to evaluate the association of episodic or prophylactic bleed control with long-term clinical, humanistic and economic outcomes...
July 13, 2018: Haemophilia: the Official Journal of the World Federation of Hemophilia
https://www.readbyqxmd.com/read/30004160/successful-immune-tolerance-in-a-young-female-with-inhibitor-and-severe-haemophilia-a-due-to-a-complex-genetic-rearrangement
#8
LETTER
L W Zuccherato, M R F Roberti, L L Jardim, S M Rezende
No abstract text is available yet for this article.
July 13, 2018: Haemophilia: the Official Journal of the World Federation of Hemophilia
https://www.readbyqxmd.com/read/30004159/distinguishing-lupus-anticoagulants-from-factor-viii-inhibitors-in-haemophilic-and-non-haemophilic-patients
#9
A G Rampersad, B Boylan, C H Miller, A Shapiro
INTRODUCTION: Accurate diagnosis of an inhibitor, a neutralizing antibody to infused factor VIII (FVIII), is essential for appropriate management of haemophilia A (HA). Low-titre inhibitors may be difficult to diagnose due to high rates of false-positive inhibitor results in that range. Transient low-titre inhibitors and false-positive inhibitors may be due to the presence of a lupus anticoagulant (LA) or other non-specific antibodies. Fluorescence immunoassay (FLI) to detect antibodies to FVIII is a sensitive method to identify inhibitors in HA...
July 13, 2018: Haemophilia: the Official Journal of the World Federation of Hemophilia
https://www.readbyqxmd.com/read/30004154/desmopressin-in-non-severe-haemophilia-a-test-response-and-clinical-outcomes-in-a-single-canadian-centre-review
#10
Julia Hews-Girard, Natalia Rydz, Adrienne Lee, Marilyn Dawn Goodyear, Man-Chiu Poon
INTRODUCTION: Desmopressin is an effective haemostatic agent for patients with non-severe haemophilia A; however, response may differ between patients of similar severity. Responsiveness is classified based on various cut-off values for plasma levels of FVIII post-desmopressin administration. Patients may be classified differently depending on the values chosen. AIM: To classify desmopressin response in non-severe haemophilia A patients with respect to current test-response definitions...
July 13, 2018: Haemophilia: the Official Journal of the World Federation of Hemophilia
https://www.readbyqxmd.com/read/30004153/performance-of-next-generation-sequencing-in-the-detection-of-large-exon-deletion-in-patients-of-haemophilia-a
#11
LETTER
X He, Z Xiong, N Shen, Y Lu, X Wang
No abstract text is available yet for this article.
July 13, 2018: Haemophilia: the Official Journal of the World Federation of Hemophilia
https://www.readbyqxmd.com/read/30004151/risk-factors-for-cardiovascular-disease-in-children-and-young-adults-with-haemophilia
#12
Jacqueline Limjoco, Courtney D Thornburg
INTRODUCTION: The origins of cardiovascular disease (CVD) begin in childhood. The primary objective of this cross-sectional cohort study was to determine the prevalence of cardiovascular risk factors in patients with congenital haemophilia A or B followed at Rady Children's Hospital San Diego Hemophilia and Thrombosis Treatment Center (HTC). We hypothesized that cardiovascular risk factors could be identified as part of a comprehensive clinic visit. MATERIALS AND METHODS: Standardized measurement of weight, height, waist circumference and blood pressure plus non-fasting glucose and lipid panel were performed...
July 13, 2018: Haemophilia: the Official Journal of the World Federation of Hemophilia
https://www.readbyqxmd.com/read/30004150/clinical-and-radiologic-results-after-open-wedge-high-tibial-osteotomy-in-haemophilic-knee-arthropathy-with-varus-deformity
#13
Y J Cho, S J Song, K H Rhyu, T S Jang, C H Park
INTRODUCTION: The previous studies have described only closed-wedge high tibial osteotomy (HTO) in haemophilic arthropathy (HA). AIM: The purpose of this study was to evaluate clinical and radiographic results after open-wedge HTO in HA with varus knee deformity. METHODS: We included 13 open-wedge HTOs in HA performed between 2005 and 2016. The mean age of patients was 28.9 years. Visual analogue scale (VAS), Western Ontario and McMaster Universities (WOMAC), and range of motion (ROM) indices were assessed...
July 13, 2018: Haemophilia: the Official Journal of the World Federation of Hemophilia
https://www.readbyqxmd.com/read/30004147/a-novel-synonymous-variant-in-the-f8-gene-p-leu40-c-120c-a-likely-causes-mild-haemophilia-a
#14
LETTER
H Inaba, K Shinozawa, K Fukutake, K Amano
No abstract text is available yet for this article.
July 13, 2018: Haemophilia: the Official Journal of the World Federation of Hemophilia
https://www.readbyqxmd.com/read/29989321/a-cross-sectional-study-of-non-attendance-among-patients-at-a-us-hemophilia-treatment-center-2010-2014
#15
V Barry, C Steffens, S Mattis, R F Sidonio, D Q Tran, C L Kempton
INTRODUCTION: Among patients with chronic disease, non-attendance at scheduled healthcare visits is associated with poor outcomes. The impact of non-attendance among patients with bleeding disorders is unknown. METHODS: Scheduling and medical record data over a 5-year period for all individuals with at least one scheduled appointment during 2010-2014 at a US Hemophilia Treatment Center (HTC) were analysed. Non-attendance rates were calculated as the number of non-attended visits divided by the number of years as a patient during the time period...
July 10, 2018: Haemophilia: the Official Journal of the World Federation of Hemophilia
https://www.readbyqxmd.com/read/29989307/clinical-relevance-of-3d-gait-analysis-in-patients-with-haemophilia
#16
REVIEW
A Fouasson-Chailloux, Y Maugars, C Vinatier, M Trossaert, P Menu, F Rannou, J Guicheux, M Dauty
Haemophilia is characterized by a congenital deficiency of clotting factor VIII or IX. One of the consequences of haemophilia is joint bleedings. Repetitive haemathroses induce cartilage damage and chronic synovitis leading to joint deterioration, and to definitive haemophilic arthropathy which is source of walking disability. Three-dimension gait analysis (3DGA) appears particularly relevant in the case of haemophilia because it allows an evaluation of several joints in weight-bearing situations. The purpose of this study was to review the interest and the contribution of 3DGA in the management of patients with haemophilia...
July 10, 2018: Haemophilia: the Official Journal of the World Federation of Hemophilia
https://www.readbyqxmd.com/read/29989273/prophylaxis-re-visited-the-potential-impact-of-novel-factor-and-non-factor-therapies-on-prophylaxis
#17
M Carcao, T Lambert, C Leissinger, C Escuriola-Ettingshausen, E Santagostino, L Aledort
No abstract text is available yet for this article.
July 10, 2018: Haemophilia: the Official Journal of the World Federation of Hemophilia
https://www.readbyqxmd.com/read/29989261/women-prefer-proactive-support-from-providers-for-treatment-of-heavy-menstrual-bleeding-a-qualitative-study-in-adult-women-with-moderate-or-severe-von-willebrand-disease
#18
H P Eising, Y V Sanders, J de Meris, F W G Leebeek, K Meijer
OBJECTIVE: To explore key factors for successful support in women with moderate or severe Von Willebrand disease (VWD) who are faced with heavy menstrual bleeding (HMB) and surgery. DESIGN: A qualitative study design with focus-group interviews and thematic analysis of the discussions. SETTINGS AND POPULATION: Eleven VWD women aged 41-68 years (median age 58 years) who had had a hysterectomy or bipolar radiofrequency ablation (BRA) because of HMB participated in this study...
July 10, 2018: Haemophilia: the Official Journal of the World Federation of Hemophilia
https://www.readbyqxmd.com/read/29984531/factor-viii-activity-of-bay-94-9027-is-accurately-measured-with-most-commonly-used-assays-results-from-an-international-laboratory-study
#19
N Church, L Leong, Y Katterle, H-F Ulbrich, I Noerenberg, S Kitchen, L A Michaels
INTRODUCTION: Discrepancies in the measurement of modified factor VIII (FVIII) products have been recognized, highlighting the need for adjustments in clinical laboratory practices to ensure effective monitoring of patients treated with these products, particularly using the one-stage (activated partial thromboplastin time [aPTT]) assay. AIM: To assess the ability of clinical laboratories to measure the activity of BAY 94-9027, a PEGylated extended half-life FVIII product, using routine (predominantly one-stage) assays in clinical laboratories METHODS: Blinded samples of FVIII-deficient plasma spiked with defined levels of BAY 94-9027 and a recombinant FVIII product comparator were provided to 52 clinical laboratories that routinely conduct FVIII testing...
July 8, 2018: Haemophilia: the Official Journal of the World Federation of Hemophilia
https://www.readbyqxmd.com/read/29984440/type-3-von-willebrand-disease-in-india-clinical-spectrum-and-molecular-profile
#20
S Elayaperumal, N A Fouzia, A Biswas, S C Nair, A Viswabandya, B George, A Abraham, J Oldenburg, E S Edison, A Srivastava
INTRODUCTION: Type 3 von Willebrand disease (VWD) is the rare and most severe form of VWD which results from a near-complete deficiency of the von Willebrand factor (VWF). This study evaluates in detail the molecular pathology of type-3 VWD in India. One hundred and two patients from 90 families were evaluated. PATIENTS AND METHODS: Phenotypic data, including bleeding scores (BS), were documented using structured questionnaires. Diagnosis of type 3 VWD was based on undetectable VWF antigen levels in the plasma...
July 8, 2018: Haemophilia: the Official Journal of the World Federation of Hemophilia
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