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HAEMOPHILIA - Haemophilia : the official journal of the World Federation of Hemophilia

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Publications

  1. 2024

  2. Association of patient, treatment and disease characteristics with patient-reported outcomes: Results of the ECHO Registry

    Hay, C. R. M., Makris, M., Shima, M., Nagao, A., Jiménez-Yuste, V., Skinner, M., Kessler, C. M. & von Mackensen, S., 01.2024, In: HAEMOPHILIA. 30, 1, p. 106-115

    Research output: SCORING: Contribution to journal › SCORING: Journal article › Research › peer-review

  3. 2023

  4. Synovitis and joint health in patients with haemophilia: Statements from a European e-Delphi consensus study

    Mancuso, M. E., Holstein, K., O'Donnell, J. S., Lobet, S., Klamroth, R. & FVIII Think Tank Study Group, 03.2023, In: HAEMOPHILIA. 29, 2, p. 619-628 10 p.

    Research output: SCORING: Contribution to journal › SCORING: Journal article › Research › peer-review

  5. The effect of a virtual child disease management programme on burden and social adjustment of caregivers of children with coagulation factor deficiencies

    Rambod, M., Pasyar, N., Irannejad Parizi, F., Edraki, M., Khair, K. & von Mackensen, S., 01.2023, In: HAEMOPHILIA. 29, 1, p. 199-209 11 p.

    Research output: SCORING: Contribution to journal › SCORING: Journal article › Research › peer-review

  6. 2022

  7. Safety of intramuscular COVID-19 vaccination in patients with haemophilia

    Tiede, A., Leise, H., Horneff, S., Oldenburg, J., Halimeh, S., Heller, C., Königs, C., Holstein, K. & Pfrepper, C., 09.2022, In: HAEMOPHILIA. 28, 5, p. 687-693 7 p.

    Research output: SCORING: Contribution to journal › SCORING: Journal article › Research › peer-review

  8. Sixth Åland Island Conference on von Willebrand disease

    Berntorp, E., Trakymienė, S. S., Federici, A. B., Holstein, K., Corrales-Medina, F. F., Pierce, G. F., Srivastava, A., Prondzinski, M. V. D., Johnsen, J. M., Zupan, I. P., Halimeh, S., Nummi, V. & Roberts, J. C., 07.2022, In: HAEMOPHILIA. 28, Suppl 5, p. 3-15 13 p.

    Research output: SCORING: Contribution to journal › SCORING: Journal article › Research › peer-review

  9. Quality of life in a large multinational haemophilia B cohort (The B-Natural study) - Unmet needs remain

    Berntorp, E., LeBeau, P., Ragni, M. V., Borhany, M., Abajas, Y. L., Tarantino, M. D., Holstein, K., Croteau, S. E., Liesner, R., Tarango, C., Carvalho, M., McGuinn, C., Funding, E., Kempton, C. L., Bidlingmaier, C., Cohen, A., Oldenburg, J., Kearney, S., Knoll, C., Kuriakose, P., Acharya, S., Reiss, U. M., Kulkarni, R., Witkop, M., Lethagen, S., Krouse, R., Shapiro, A. D. & Astermark, J., 05.2022, In: HAEMOPHILIA. 28, 3, p. 453-461 9 p.

    Research output: SCORING: Contribution to journal › SCORING: Journal article › Research › peer-review

  10. 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)

    Miesbach, W., Eichler, H., Holstein, K., Holzhauer, S., Klamroth, R., Knöfler, R., Male, C., Olivieri, M., Oldenburg, J. & Tiede, A., 03.2022, In: HAEMOPHILIA. 28, 2, p. 264-269 6 p.

    Research output: SCORING: Contribution to journal › SCORING: Journal article › Research › peer-review

  11. Immune tolerance induction in the era of emicizumab - still the first choice for patients with haemophilia A and inhibitors?

    Holstein, K., Le Quellec, S., Klamroth, R., Batorova, A., Holme, P. A., Jiménez-Yuste, V. & Astermark, J., 03.2022, In: HAEMOPHILIA. 28, 2, p. 215-222 8 p.

    Research output: SCORING: Contribution to journal › SCORING: Journal article › Research › peer-review

  12. Zero incidence of factor VIII inhibitors and successful haemostatic response in previously factor VIII-treated patients with haemophilia A switching to turoctocog alfa in a noninterventional study

    Escuriola Ettingshausen, C., Katsarou, O., Kotnik, B. F., Borel Derlon, A., Schwarz, R., Ypma, P. F., Matytsina, I., Dey, S. & Schutgens, R. E. G., 01.2022, In: HAEMOPHILIA. 28, 1, p. 46-54 9 p.

    Research output: SCORING: Contribution to journal › SCORING: Journal article › Research › peer-review

  13. 2021

  14. Clinical and patient reported outcome in total ankle replacement compared to ankle fusion in end-stage haemophilic arthropathy

    Mussawy, H., Kehrer, M., Strahl, A., Rolvien, T., Hubert, J., Beil, F. T., Wirtz, D. C., Oldenburg, J., Holstein, K. & Strauss, A. C., 11.2021, In: HAEMOPHILIA. 27, 6, p. e739-e746

    Research output: SCORING: Contribution to journal › SCORING: Journal article › Research › peer-review

  15. The B-Natural study-The outcome of immune tolerance induction therapy in patients with severe haemophilia B

    Astermark, J., Holstein, K., Abajas, Y. L., Kearney, S., Croteau, S. E., Liesner, R., Funding, E., Kempton, C. L., Acharya, S., Lethagen, S., LeBeau, P., Bowen, J., Berntorp, E. & Shapiro, A. D., 09.2021, In: HAEMOPHILIA. 27, 5, p. 802-813 12 p.

    Research output: SCORING: Contribution to journal › SCORING: Journal article › Research › peer-review

  16. The effect of emicizumab prophylaxis on long-term, self-reported physical health in persons with haemophilia A without factor VIII inhibitors in the HAVEN 3 and HAVEN 4 studies

    Skinner, M. W., Négrier, C., Paz-Priel, I., Chebon, S., Jiménez-Yuste, V., Callaghan, M. U., Lehle, M., Niggli, M., Mahlangu, J., Shapiro, A., Shima, M., Campinha-Bacote, A., Levy, G. G., Oldenburg, J., von Mackensen, S. & Pipe, S. W., 09.2021, In: HAEMOPHILIA. 27, 5, p. 854-865 12 p.

    Research output: SCORING: Contribution to journal › SCORING: Journal article › Research › peer-review

  17. Health-related quality of life and health status in adolescent and adult people with haemophilia A without factor VIII inhibitors-A non-interventional study

    Oldenburg, J., Tran, H., Peyvandi, F., Núñez, R., Trask, P., Chebon, S., Mahlangu, J. N., Lehle, M., Jiménez-Yuste, V. & von Mackensen, S., 05.2021, In: HAEMOPHILIA. 27, 3, p. 398-407 10 p.

    Research output: SCORING: Contribution to journal › SCORING: Journal article › Research › peer-review

  18. Natural history study of factor IX deficiency with focus on treatment and complications (B-Natural)

    Shapiro, A. D., Ragni, M. V., Borhany, M., Abajas, Y. L., Tarantino, M. D., Holstein, K., Croteau, S. E., Liesner, R., Tarango, C., Carvalho, M., McGuinn, C., Funding, E., Kempton, C. L., Bidlingmaier, C., Cohen, A., Oldenburg, J., Kearney, S., Knoll, C., Kuriakose, P., Acharya, S., Reiss, U. M., Kulkarni, R., Witkop, M., Lethagen, S., Donfield, S., LeBeau, P., Berntorp, E. & Astermark, J., 01.2021, In: HAEMOPHILIA. 27, 1, p. 49-59 11 p.

    Research output: SCORING: Contribution to journal › SCORING: Journal article › Research › peer-review

  19. 2020

  20. Challenges and key lessons from the design and implementation of an international haemophilia registry supported by a pharmaceutical company

    Hay, C. R. M., Shima, M., Makris, M., Jiménez-Yuste, V., Oldenburg, J., Fischer, K., Iorio, A., Skinner, M. W., Santagostino, E., von Mackensen, S. & Kessler, C. M., 11.2020, In: HAEMOPHILIA. 26, 6, p. 966-974 9 p.

    Research output: SCORING: Contribution to journal › SCORING: Journal article › Research › peer-review

  21. Determining meaningful health-related quality-of-life improvement in persons with haemophilia A using the Haemophilia Quality of Life Questionnaire for Adults (Haem-A-QoL)

    von Mackensen, S., Catalani, O., Asikanius, E., Paz-Priel, I., Lehle, M. & Trask, P., 11.2020, In: HAEMOPHILIA. 26, 6, p. 1019-1030 12 p.

    Research output: SCORING: Contribution to journal › SCORING: Journal article › Research › peer-review

  22. Health-related quality of life and caregiver burden of emicizumab in children with haemophilia A and factor VIII inhibitors-Results from the HAVEN 2 study

    Mancuso, M. E., Mahlangu, J., Sidonio, R., Trask, P., Uguen, M., Chang, T., Shima, M., Young, G., Oldenburg, J. & von Mackensen, S., 11.2020, In: HAEMOPHILIA. 26, 6, p. 1009-1018 10 p.

    Research output: SCORING: Contribution to journal › SCORING: Journal article › Research › peer-review

  23. Impact of COVID-19 pandemic on mental health of patients with inherited bleeding disorders in Germany

    von Mackensen, S., Halimeh, S., Siebert, M., Wermes, C., Hassenpflug, W., Holstein, K. & Olivieri, M., 11.2020, In: HAEMOPHILIA. 26, 6, p. e272-e281

    Research output: SCORING: Contribution to journal › SCORING: Journal article › Research › peer-review

  24. Do patients with von Willebrand disease exhibit higher blood loss and revision rates in hip and knee arthroplasty? A case-control study

    Kocaoğlu, H., Hennes, F., Abdelaziz, H., Sandiford, N. A., Gehrke, T. & Citak, M., 26.05.2020, In: HAEMOPHILIA. 26, 3, p. 513-519 7 p.

    Research output: SCORING: Contribution to journal › SCORING: Journal article › Research › peer-review

  25. Cross-cultural adaptation and validation of Haem-A-QoL in Côte d'Ivoire

    Lambert, C., Meité, ND., Sanogo, I., Lobet, S., von Mackensen, S. & Hermans, C., 05.2020, In: HAEMOPHILIA. 26, 3, p. 459-466 8 p.

    Research output: SCORING: Contribution to journal › SCORING: Journal article › Research › peer-review

  26. Heavy menstrual bleeding in women with inherited bleeding disorders

    Djambas Khayat, C., Gouider, E., von Mackensen, S. & Abdul Kadir, R., 04.2020, In: HAEMOPHILIA. 26 Suppl 3, p. 16-19 4 p.

    Research output: SCORING: Contribution to journal › SCORING: Review article › Research

  27. 2019

  28. Health-related quality of life and health status in persons with haemophilia A with inhibitors: A prospective, multicentre, non-interventional study (NIS)

    Mahlangu, J., Oldenburg, J., Callaghan, M. U., Shima, M., Mancuso, M. E., Trask, P., Recht, M., Garcia, C., Yang, R., Lehle, M., Macharia, H., Asikanius, E., Levy, G. G., Kruse-Jarres, R. & von Mackensen, S., 05.2019, In: HAEMOPHILIA. 25, 3, p. 382-391 10 p.

    Research output: SCORING: Contribution to journal › SCORING: Journal article › Research › peer-review

  29. The burden of bleeds and other clinical determinants on caregivers of children with haemophilia (the BBC Study)

    Khair, K., Klukowska, A., Myrin Westesson, L., Kavakli, K., Escuriola, C., Uitslager, N., Santoro, C., Holland, M. & von Mackensen, S., 05.2019, In: HAEMOPHILIA. 25, 3, p. 416-423 8 p.

    Research output: SCORING: Contribution to journal › SCORING: Journal article › Research › peer-review

  30. The impact of psychosocial determinants on caregivers' burden of children with haemophilia (results of the BBC study)

    von Mackensen, S., Myrin Westesson, L., Kavakli, K., Klukowska, A., Escuriola, C., Uitslager, N., Santoro, C., Holland, M. & Khair, K., 05.2019, In: HAEMOPHILIA. 25, 3, p. 424-432 9 p.

    Research output: SCORING: Contribution to journal › SCORING: Journal article › Research › peer-review

  31. Health-related quality of life in paediatric haemophilia B patients treated with rIX-FP

    von Mackensen, S., Shah, J., Seifert, W. & Kenet, G., 01.2019, In: HAEMOPHILIA. 25, 1, p. 45-53 9 p.

    Research output: SCORING: Contribution to journal › SCORING: Journal article › Research › peer-review

  32. The effect of emicizumab prophylaxis on health-related outcomes in persons with haemophilia A with inhibitors: HAVEN 1 Study

    Oldenburg, J., Mahlangu, J. N., Bujan, W., Trask, P., Callaghan, M. U., Young, G., Asikanius, E., Peyvandi, F., Santagostino, E., Kruse-Jarres, R., Negrier, C., Kessler, C., Xu, J., Windyga, J., Shima, M. & von Mackensen, S., 01.2019, In: HAEMOPHILIA. 25, 1, p. 33-44 12 p.

    Research output: SCORING: Contribution to journal › SCORING: Journal article › Research › peer-review

  33. 2018

  34. Validation of the Haemophilia & Exercise Project-Test-Questionnaire (HEP-Test-Q)-An instrument for the assessment of subjective physical functioning in children with haemophilia

    von Mackensen, S., Hilberg, T., Valentino, L. A., Kurnik, K. & Khair, K., 11.2018, In: HAEMOPHILIA. 24, 6, p. 888-895 8 p.

    Research output: SCORING: Contribution to journal › SCORING: Journal article › Research › peer-review

  35. Joint disease in haemophilia: Pathophysiology, pain and imaging

    van Vulpen, L. F. D., Holstein, K. & Martinoli, C., 05.2018, In: HAEMOPHILIA. 24, SI 6, p. 44-49 6 p.

    Research output: SCORING: Contribution to journal › SCORING: Review article › Research

  36. The multiple benefits of sport in haemophilia

    Farrugia, A., Gringeri, A. & von Mackensen, S., 05.2018, In: HAEMOPHILIA. 24, 3, p. 341-343 3 p.

    Research output: SCORING: Contribution to journal › Other (editorial matter etc.) › Research

  37. 2017

  38. Study of physical function in adolescents with haemophilia: The SO-FIT study

    Khair, K., Holland, M., Bladen, M., Griffioen, A., McLaughlin, P., von Mackensen, S. & SO-FIT Study Group, 11.2017, In: HAEMOPHILIA. 23, 6, p. 918-925

    Research output: SCORING: Contribution to journal › SCORING: Journal article › Research › peer-review

  39. Co-morbidities and bleeding in elderly patients with haemophilia-A survey of the German, Austrian and Swiss Society of Thrombosis and Haemostasis Research (GTH)

    Miesbach, W., Reitter-Pfoertner, S-E., Klamroth, R., Langer, F., Wolf, H-H., Tiede, A., Siegmund, B., Scholz, U., Müller, P. R., Eichler, H. & Pabinger, I., 09.2017, In: HAEMOPHILIA. 23, 5, p. 721-727 7 p.

    Research output: SCORING: Contribution to journal › SCORING: Journal article › Research › peer-review

  40. Haemophilia patients' unmet needs and their expectations of the new extended half-life factor concentrates

    von Mackensen, S., Kalnins, W., Krucker, J., Weiss, J., Miesbach, W., Albisetti, M., Pabinger, I. & Oldenburg, J., 07.2017, In: HAEMOPHILIA. 23, 4, p. 566-574 9 p.

    Research output: SCORING: Contribution to journal › SCORING: Journal article › Research › peer-review

  41. Measurement properties of the Haem-A-QoL in haemophilia clinical trials

    von Mackensen, S., Eldar-Lissai, A., Auguste, P., Krishnan, S., von Maltzahn, R., Yu, R. & Wyrwich, K. W., 05.2017, In: HAEMOPHILIA. 23, 3, p. 383-391 9 p.

    Research output: SCORING: Contribution to journal › SCORING: Journal article › Research › peer-review

  42. Choosing outcome assessment tools in haemophilia care and research: a multidisciplinary perspective

    Fischer, K., Poonnoose, P., Dunn, A. L., Babyn, P., Manco-Johnson, M. J., David, J. A., van der Net, J., Feldman, B., Berger, K., Carcao, M., de Kleijn, P., Silva, M., Hilliard, P., Doria, A., Srivastava, A., Blanchette, V. & participants of the International Symposium on Outcome Measures in Hemophilic Arthropathy, 01.2017, In: HAEMOPHILIA. 23, 1, p. 11-24

    Research output: SCORING: Contribution to journal › SCORING: Journal article › Research › peer-review

  43. RCT - subjective physical performance and quality of life after a 6-month programmed sports therapy (PST) in patients with haemophilia

    Runkel, B., Von Mackensen, S. & Hilberg, T., 01.2017, In: HAEMOPHILIA. 23, 1, p. 144-151

    Research output: SCORING: Contribution to journal › SCORING: Journal article › Research › peer-review

  44. 2016

  45. Changes in health-related quality of life with treatment of longer-acting clotting factors: results in the A-LONG and B-LONG clinical studies

    Wyrwich, K. W., Krishnan, S., Auguste, P., Poon, J-L., von Maltzahn, R., Yu, R., Pierce, G. F., Mei, B., Mahlangu, J. & von Mackensen, S., 11.2016, In: HAEMOPHILIA. 22, 6, p. 866-872 7 p.

    Research output: SCORING: Contribution to journal › SCORING: Journal article › Research › peer-review

  46. Expression and release of platelet protein disulphide isomerase in patients with haemophilia A

    Voigtländer, M., Holstein, K., Spath, B., Bokemeyer, C. & Langer, F., 11.2016, In: HAEMOPHILIA. 22, 6, p. e537-e544

    Research output: SCORING: Contribution to journal › SCORING: Journal article › Research › peer-review

  47. Surgical procedures in patients with haemophilic arthropathy of the ankle

    Barg, A., Morris, S. C., Schneider, S. W., Phisitkul, P. & Saltzman, C. L., 05.2016, In: HAEMOPHILIA. 22, 3, p. e156-76

    Research output: SCORING: Contribution to journal › SCORING: Journal article › Research › peer-review

  48. The impact of social factors on outcomes in patients with bleeding disorders

    Holstein, K., von Mackensen, S., Bokemeyer, C. & Langer, F., 01.2016, In: HAEMOPHILIA. 22, 1, p. 46-53

    Research output: SCORING: Contribution to journal › SCORING: Journal article › Research › peer-review

  49. The impact of sport on health status, psychological well-being and physical performance of adults with haemophilia

    von Mackensen, S., Harrington, C., Tuddenham, E., Littley, A., Will, A., Fareh, M., Hay, C. R. M. & Khair, K., 01.2016, In: HAEMOPHILIA. 22, 4, p. 521-30 10 p.

    Research output: SCORING: Contribution to journal › SCORING: Journal article › Research › peer-review

  50. 2015

  51. Interpreting important health-related quality of life change using the Haem-A-QoL

    Wyrwich, K. W., Krishnan, S., Poon, J. L., Auguste, P., von Maltzahn, R., Yu, R. & von Mackensen, S., 09.2015, In: HAEMOPHILIA. 21, 5, p. 578-84 7 p.

    Research output: SCORING: Contribution to journal › SCORING: Journal article › Research › peer-review

  52. Novel, human cell line-derived recombinant factor VIII (human-cl rhFVIII; Nuwiq(®) ) in adults with severe haemophilia A: efficacy and safety

    Lissitchkov, T., Hampton, K., von Depka, M., Hay, C., Rangarajan, S., Tuddenham, E., Holstein, K., Huth-Kühne, A., Pabinger, I., Knaub, S., Bichler, J. & Oldenburg, J., 28.08.2015, In: HAEMOPHILIA.

    Research output: SCORING: Contribution to journal › SCORING: Journal article › Research › peer-review

  53. 2014

  54. Germline de novo mutations and linkage markers vs. DNA sequencing for carrier detection in von Willebrand disease

    Ahmad, F., Oyen, F., Jan, R., Budde, U., Schneppenheim, R. & Saxena, R., 08.04.2014, In: HAEMOPHILIA. 20, 4, p. e311-e317

    Research output: SCORING: Contribution to journal › SCORING: Journal article › Research › peer-review

  55. 2013

  56. Phenotypic and genotypic characterization of 10 Finnish patients with von Willebrand disease type 3: discovery of two main mutations

    Jokela, V., Lassila, R., Szanto, T., Joutsi-Korhonen, L., Armstrong, E., Oyen, F., Schneppenheim, S. & Schneppenheim, R., 01.11.2013, In: HAEMOPHILIA. 19, 6, p. e344-8

    Research output: SCORING: Contribution to journal › SCORING: Journal article › Research › peer-review

  57. Identification of a homozygous Cys410Ser mutation in the von Willebrand factor D2 domain causing type 2A(IIC) von Willebrand disease phenotype in an Iranian patient

    Enayat, M. S., Ravanbod, S., Rassoulzadegan, M., Jazebi, M., Ala, F., Budde, U., Schneppenheim, S., Obser, T. & Schneppenheim, R., 01.07.2013, In: HAEMOPHILIA. 19, 4, p. e261-4

    Research output: SCORING: Contribution to journal › Other (editorial matter etc.) › Research

  58. Cross-cultural adaptation and linguistic validation of age-group-specific haemophilia patient-reported outcome (PRO) instruments for patients and parents.

    Mackensen von, S., Campos, I. G., Acquadro, C. & Strandberg-Larsen, M., 2013, In: HAEMOPHILIA. 19, 2, p. 73-83 2.

    Research output: SCORING: Contribution to journal › SCORING: Journal article › Research › peer-review

  59. Haemophilia & Exercise Project (HEP): the impact of 1-year sports therapy programme on physical performance in adult haemophilia patients.

    Czepa, D., Mackensen von, S. & Hilberg, T., 2013, In: HAEMOPHILIA. 19, 2, p. 194-199 2.

    Research output: SCORING: Contribution to journal › SCORING: Journal article › Research › peer-review

  60. Health-related quality of life in haemophilia patients with inhibitors and their caregivers.

    Dekoven, M., Wisniewski, T., Petrilla, A., Holot, N., Lee, W. C., Cooper, D. L. & Mackensen von, S., 2013, In: HAEMOPHILIA. 19, 2, p. 287-293 2.

    Research output: SCORING: Contribution to journal › SCORING: Journal article › Research › peer-review

  61. 2012

  62. The international factor IX treatment network survey

    Berntorp, E., Shapiro, A. D., Waters, J., Astermark, J., International Factor IX Treatment Network & Holstein, K., 01.05.2012, In: HAEMOPHILIA. 18, 3, p. e60-2

    Research output: SCORING: Contribution to journal › SCORING: Journal article › Research › peer-review

  63. Haemophilia & Exercise Project (HEP): subjective and objective physical performance in adult haemophilia patients--results of a cross-sectional study.

    Czepa, D., Mackensen von, S. & Hilberg, T., 2012, In: HAEMOPHILIA. 18, 1, p. 80-85 1.

    Research output: SCORING: Contribution to journal › SCORING: Journal article › Research › peer-review

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