HAEMOPHILIA - Haemophilia : the official journal of the World Federation of Hemophilia
Publications
- 2024
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. 106-115Research output: SCORING: Contribution to journal › SCORING: Journal article › Research › peer-review
- 2023
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
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
- 2022
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
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
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
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
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
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
- 2021
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-e746Research output: SCORING: Contribution to journal › SCORING: Journal article › Research › peer-review
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
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
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
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
- 2020
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
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
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
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-e281Research output: SCORING: Contribution to journal › SCORING: Journal article › Research › peer-review
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
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
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
- 2019
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
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
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
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
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
- 2018
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
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
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
- 2017
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. 918-925Research output: SCORING: Contribution to journal › SCORING: Journal article › Research › peer-review
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
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
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
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. 11-24Research output: SCORING: Contribution to journal › SCORING: Journal article › Research › peer-review
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. 144-151Research output: SCORING: Contribution to journal › SCORING: Journal article › Research › peer-review
- 2016
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
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-e544Research output: SCORING: Contribution to journal › SCORING: Journal article › Research › peer-review
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. e156-76Research output: SCORING: Contribution to journal › SCORING: Journal article › Research › peer-review
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. 46-53Research output: SCORING: Contribution to journal › SCORING: Journal article › Research › peer-review
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
- 2015
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
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
- 2014
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-e317Research output: SCORING: Contribution to journal › SCORING: Journal article › Research › peer-review
- 2013
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. e344-8Research output: SCORING: Contribution to journal › SCORING: Journal article › Research › peer-review
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. e261-4Research output: SCORING: Contribution to journal › Other (editorial matter etc.) › Research
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
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
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
- 2012
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. e60-2Research output: SCORING: Contribution to journal › SCORING: Journal article › Research › peer-review
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