Haemophilia Experiences, Results and Opportunities (HERO) Study: survey methodology and population demographics (English)
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In:
Haemophilia
;
20
, 1
;
44-51
;
2014
- Article (Journal) / Electronic Resource
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Title:Haemophilia Experiences, Results and Opportunities (HERO) Study: survey methodology and population demographics
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Contributors:Forsyth, A. L. ( author ) / Gregory, M. ( author ) / Nugent, D. ( author ) / Garrido, C. ( author ) / Pilgaard, T. ( author ) / Cooper, D. L. ( author ) / Iorio, A. ( author )
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Published in:Haemophilia ; 20, 1 ; 44-51
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Publisher:
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Publication date:2014-01-01
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Size:8 pages
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ISSN:
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DOI:
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Type of media:Article (Journal)
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Type of material:Electronic Resource
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Language:English
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Keywords:
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Source:
Table of contents – Volume 20, Issue 1
The tables of contents are generated automatically and are based on the data records of the individual contributions available in the index of the TIB portal. The display of the Tables of Contents may therefore be incomplete.
- 1
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Identifying information needs among children and teens living with haemophiliaSimmons, G. M. / Frick, N. / Wang, A. / Miller, M. E. / Fragueiro, D. et al. | 2014
- 9
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Towards personalizing haemophilia care: using the Haemophilia Severity Score to assess 178 patients in a single institutionVyas, S. / Enockson, C. / Hernandez, L. / Valentino, L. A. et al. | 2014
- 15
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Pharmacokinetics, efficacy and safety of BAX326, a novel recombinant factor IX: a prospective, controlled, multicentre phase I/III study in previously treated patients with severe (FIX level <1%) or moderately severe (FIX level ≤2%) haemophilia BWindyga, J. / Lissitchkov, T. / Stasyshyn, O. / Mamonov, V. / Rusen, L. / Lamas, J. L. / Oh, M.‐S. / Chapman, M. / Fritsch, S. / Pavlova, B. G. et al. | 2014
- 25
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Prevalent inhibitors in haemophilia B subjects enrolled in the Universal Data Collection databasePuetz, J. / Soucie, J. M. / Kempton, C. L. / Monahan, P. E. / Hemophilia Treatment Center Network (HTCN) Investigators et al. | 2014
- 32
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Designing first‐in‐human dose of coagulation factors: application of pharmacokinetic allometric scalingMahmood, I. et al. | 2014
- 39
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An objective method for assessing adherence to prophylaxis in adults with severe haemophiliaHo, S. / Gue, D. / McIntosh, K. / Bucevska, M. / Yang, M. / Jackson, S. et al. | 2014
- 44
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Haemophilia Experiences, Results and Opportunities (HERO) Study: survey methodology and population demographicsForsyth, A. L. / Gregory, M. / Nugent, D. / Garrido, C. / Pilgaard, T. / Cooper, D. L. / Iorio, A. et al. | 2014
- 52
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Therapeutic and prophylactic ethanol lock therapy in patients with bleeding disordersRajpurkar, M. / McGrath, E. / Joyce, J. / Boldt‐MacDonald, K. / Chitlur, M. / Lusher, J. et al. | 2014
- 58
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Long‐standing prophylactic therapy vs. episodic treatment in young people with severe haemophilia: a comparison of age‐matched Danish and Russian patientsIngerslev, J. / Lethagen, S. / Hvitfeldt Poulsen, L. / Sørensen, B. / Lopatina, E. / Tentsova, I. / Yastrubinetskaya, O. / Plyushch, O. P. et al. | 2014
- 65
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Randomized comparison of prophylaxis and on‐demand regimens with FEIBA NF in the treatment of haemophilia A and B with inhibitorsAntunes, S. V. / Tangada, S. / Stasyshyn, O. / Mamonov, V. / Phillips, J. / Guzman‐Becerra, N. / Grigorian, A. / Ewenstein, B. / Wong, W.‐Y. et al. | 2014
- 73
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Implementing haemophilia care in Senegal, West AfricaDiop, S. / Seck, M. / Sy‐Bah, D. / Faye, B. F. / Sow‐Ndoye, A. / Gueye, Y. B. / Senghor, A. B. / Sall‐Fall, A. / Toure‐Fall, A. O. / Dièye, T. N. et al. | 2014
- 78
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Cancer detection and management in patients with haemophilia: a retrospective European multicentre studyBiron‐Andreani, C. / de Moerloose, P. / D'oiron, R. / Chambost, H. / Schved, J.‐F. / Hermans, C. et al. | 2014
- 83
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Primary and rescue immune tolerance induction in children and adults: a multicentre international study with a VWF‐containing plasma‐derived FVIII concentrateOldenburg, J. / Jiménez‐Yuste, V. / Peiró‐Jordán, R. / Aledort, L. M. / Santagostino, E. et al. | 2014
- 92
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Factor VIII concentrate infusion in patients with haemophilia results in decreased von Willebrand factor and ADAMTS‐13 activityvan Bladel, E. R. / Tuinenburg, A. / Roest, M. / de Groot, P. G. / Schutgens, R. E. G. et al. | 2014
- 99
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Pharmacokinetics of recombinant factor XIII in young children with congenital FXIII deficiency and comparison with older patientsWilliams, M. / Will, A. / Stenmo, C. / Rosholm, A. / Tehranchi, R. et al. | 2014
- 106
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The spectrum of factor XI deficiency in ItalyCastaman, G. / Giacomelli, S. H. / Caccia, S. / Riccardi, F. / Rossetti, G. / Dragani, A. / Giuffrida, A. C. / Biasoli, C. / Duga, S. et al. | 2014
- 114
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Factor XIII deficiency: complete phenotypic characterization of two cases with novel causative mutationsKatona, É. / Muszbek, L. / Devreese, K. / Kovács, K. B. / Bereczky, Z. / Jonkers, M. / Shemirani, A. H. / Mondelaers, V. / Ermens, A. A. M. et al. | 2014
- 121
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Bone density in haemophilia: a single institutional cross‐sectional studyKempton, C. L. / Antun, A. / Antoniucci, D. M. / Carpenter, W. / Ribeiro, M. / Stein, S. / Slovensky, L. / Elon, L. et al. | 2014
- 129
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Efficacy and safety using autotransfusion system with postoperative shed blood following total knee arthroplasty in haemophiliaKang, D. G. / Khurana, S. / Baek, J. H. / Park, Y. S. / Lee, S. H. / Kim, K. I. et al. | 2014
- 133
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Orthopaedic surgery in patients with von Willebrand diseaseSiboni, S. M. / Biguzzi, E. / Solimeno, L. P. / Pasta, G. / Mistretta, C. / Mannucci, P. M. / Peyvandi, F. et al. | 2014
- 141
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Use of thromboelastography and thrombin generation assay to predict clinical phenotype in patients with severe FVII deficiencyTran, H. T. T. / Tjønnfjord, G. E / Holme, P. A. et al. | 2014
- 147
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A two‐centre comparative evaluation of new automated assays for von Willebrand factor ristocetin cofactor activity and antigenStufano, F. / Lawrie, A. S. / La Marca, S. / Berbenni, C. / Baronciani, L. / Peyvandi, F. et al. | 2014
- e1
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Issues in the ageing individual with haemophilia and other inherited bleeding disorders: understanding and responding to the patients’ perspectiveSmith, N. / Bartholomew, C. / Jackson, S. et al. | 2014
- e7
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Thrombin generation as objective parameter of treatment response in patients with severe haemophilia A and high‐titre inhibitorsLuna‐Záizar, H. / Beltrán‐Miranda, C. P. / Esparza‐Flores, M. A. / Soto‐Padilla, J. / Bergés‐García, A. / Rodríguez‐Zepeda, M. D. C. / Pompa‐Garza, M. T. / Jaloma‐Cruz, A. R. et al. | 2014
- e15
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Correlation between endogenous VWF:Ag and PK parameters and bleeding frequency in severe haemophilia A subjects during three‐times‐weekly prophylaxis with rFVIII‐FSLalezari, S. / Martinowitz, U. / Windyga, J. / Enriquez, M. M. / Delesen, H. / Schwartz, L. / Scharrer, I. et al. | 2014
- e23
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Safety of recombinant activated factor VII (rFVIIa) in patients with congenital haemophilia with inhibitors: overall rFVIIa exposure and intervals following high (>240 μg kg−1) rFVIIa doses across clinical trials and registriesShapiro, A. D. / Neufeld, E. J. / Blanchette, V. / Salaj, P. / Gut, R. Z. / Cooper, D. L. et al. | 2014
- e32
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Agonistic anti‐human Fas monoclonal antibody induces fibroblast‐like synoviocyte apoptosis in haemophilic arthropathy: potential therapeutic implicationsRomano, E. / Manetti, M. / Peruzzi, F. / Melchiorre, D. / Milia, A. F. / Bellando‐Randone, S. / Nishioka, K. / Innocenti, M. / Carulli, C. / Linari, S. et al. | 2014
- e40
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Production of functional coagulation factor VIII from iPSCs using a lentiviral vectorKashiwakura, Y. / Ohmori, T. / Mimuro, J. / Madoiwa, S. / Inoue, M. / Hasegawa, M. / Ozawa, K. / Sakata, Y. et al. | 2014
- e45
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Survival analysis of Y‐90 radiosynovectomy in the treatment of haemophilic synovitis of the knee: a 10‐year retrospective reviewTurkmen, C. / Kilicoglu, O. / Dikici, F. / Bezgal, F. / Kuyumcu, S. / Gorgun, O. / Taser, O. / Zulfikar, B. et al. | 2014
- e51
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Comparison of ultrasound and magnetic resonance imaging for diagnosis and follow‐up of joint lesions in patients with haemophiliaSierra Aisa, C. / Lucía Cuesta, J. F. / Rubio Martínez, A. / Fernández Mosteirín, N. / Iborra Muñoz, A. / Abío Calvete, M. / Guillén Gómez, M. / Moretó Quintana, A. / Rubio Félix, D. et al. | 2014
- e58
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Clinical features and management of haemophilic pseudotumours: a single US centre experience over a 30‐year periodLim, M. Y. / Nielsen, B. / Ma, A. / Key, N. S. et al. | 2014
- e63
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Musculoskeletal evaluation in severe haemophilia A patients from Latin AmericaOzelo, M. C. / Villaça, P. R. / Pérez‐Bianco, R. / Candela, M. / Garcia‐Chavez, J. / Moreno‐Rodriguez, B. / Rodrigues, M. B. / Rodriguez‐Grecco, I. / Solano, M. H. / Chumpitaz, G. et al. | 2014
- e71
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Effectiveness of two modalities of physiotherapy in the treatment of haemophilic arthropathy of the ankle: a randomized pilot studyCuesta‐Barriuso, R. / Gómez‐Conesa, A. / López‐Pina, J.‐A. et al. | 2014
- e79
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An experience of using Traumastem P in control of spontaneous nose bleeding in patients with inherited bleeding disorders in southern IranHaghpanah, S. / Zahedi, Z. / Parand, S. / Karimi, M. et al. | 2014
- e81
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Acquired factor V deficiency in a patient without evidence of a classical inhibitorSosa, I. R. / Ellery, P. / Mast, A. / Neff, A. T. / Gailani, D. et al. | 2014
- e83
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The role of arthropathy in the development of osteoporosis in patients with haemophilia: do we need more?Anagnostis, P. / Vakalopoulou, S. / Karras, S. / Charizopoulou, M. / Garipidou, V. et al. | 2014
- e86
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Severe postoperative haemarthrosis following a total knee replacement in a haemophiliac patient caused by a pseudoaneurysm: early treatment with arterial embolizationRodriguez‐Merchan, E. C. / Jimenez‐Yuste, V. / Gomez‐Cardero, P. / Rodriguez, T. et al. | 2014
- e89
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Polymorphism of thrombin‐activatable fibrinolysis inhibitor and risk of intracranial haemorrhage in factor XIII deficiencyNaderi, M. / Dorgalaleh, A. / Alizadeh, S. / Kashani Khatib, Z. / Tabibian, S. / Kazemi, A. / Dargahi, H. / Bamedi, T. et al. | 2014
- e92
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A rare case of acquired haemophilia in a patient with chronic myelomonocytic leukaemia successfully treated with decitabineShah, D. / Kumar, R. / Gaikazian, S. et al. | 2014
- e94
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Successful coronary artery bypass grafting in a patient with severe FVII deficiency and minimal use of recombinant FVIIaMartin, K. / McMahon, B. et al. | 2014
- e97
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Arthroscopic ankle arthrodesis for end‐stage haemophilic arthropathy of the ankleBaker, J. F. / Maleki, F. / Broderick, J. M. / McKenna, J. et al. | 2014
- e100
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Pharmacokinetics of recombinant and plasma‐derived factor VIII products in paediatric patients with severe haemophilia ASteele, M. R. / Nagel, K. / Chan, A. K. C. et al. | 2014
- e101
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Repeated recombinant activated factor VII administration in a patient with congenital factor VII deficiency undergoing modified radical hysterectomy: a case reportShirasawa, H. / Yoshioka, T. / Sawada, K. / Terada, Y. et al. | 2014
- e104
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Acquired factor XIII deficiency: still a clinical challenge in the era of novel therapyTha, M. H. / Tien, S. L. et al. | 2014
- e106
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End‐stage haemophilic arthropathy of the ankle: ankle fusion or total ankle replacementCarlos Rodriguez‐Merchan, E. et al. | 2014
- e108
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Prophylaxis in children with haemophilia – the Polish experienceKlukowska, A. / Urasinski, T. / Janik‐Moszant, A. / Bobrowska, H. / Balwierz, W. / Woznica‐Karczmarz, I. / Dobaczewski, G. / Wlazlowski, M. / Koltan, A. / Badowska, W. et al. | 2014
- e110
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Continuous infusion of rFVIIa during surgery in a FVII‐deficient patient: a case report from JapanNagao, A. / Hanabusa, H. / Takedani, H. et al. | 2014