HAEMOPHILIA - Haemophilia : the official journal of the World Federation of Hemophilia
Publications
- 2012
Haemophilia care in Europe: the ESCHQoL study.
Schramm, W., Gringeri, A., Ljung, R., Berger, K., Crispin, A., Bullinger, M., Giangrande, P. L. F., Mackensen von, S., Mantovani, L. G., Nemes, L., Serban, M. & Group, ESCHQOL. S., 2012, In: HAEMOPHILIA. 18, 5, p. 729-737 5.Research output: SCORING: Contribution to journal › SCORING: Journal article › Research › peer-review
Health-related quality of life and psychological well-being in elderly patients with haemophilia.
Mackensen von, S., Gringeri, A., Siboni, S. M., Mannucci, P. M. & Centres, I. A. O. H., 2012, In: HAEMOPHILIA. 18, 3, p. 345-352 3.Research output: SCORING: Contribution to journal › SCORING: Journal article › Research › peer-review
Pain management in patients with haemophilia: a European survey.
Holstein, K., Klamroth, R., Richards, M., Carvalho, M., Pérez-Garrido, R., Gringeri, A. & Board, E. H. T. S., 2012, In: HAEMOPHILIA. 18, 5, p. 743-752 5.Research output: SCORING: Contribution to journal › SCORING: Journal article › Research › peer-review
Quality of life in adult patients with haemophilia--a single centre experience from Sweden.
Lindvall, K., Mackensen von, S. & Berntorp, E., 2012, In: HAEMOPHILIA. 18, 4, p. 527-531 4.Research output: SCORING: Contribution to journal › SCORING: Journal article › Research › peer-review
The impact of a specific aqua-training for adult haemophilic patients--results of the WATERCISE study (WAT-QoL).
Mackensen von, S., Eifrig, B., Zäch, D., Kalnins, J., Wieloch, A. & Zeller, W., 2012, In: HAEMOPHILIA. 18, 5, p. 714-721 5.Research output: SCORING: Contribution to journal › SCORING: Journal article › Research › peer-review
The impact of sport on children with haemophilia.
Khair, K., Littley, A., Will, A. & Mackensen von, S., 2012, In: HAEMOPHILIA. 18, 6, p. 898-905 6.Research output: SCORING: Contribution to journal › SCORING: Journal article › Research › peer-review
Why should we care about quality of life in persons with haemophilia?
Aledort, L., Bullinger, M., Mackensen von, S., Wasserman, J., Young, N. L., Globe, D. & Group, H. R. Q. O. L. E. W. G. O. T. I. P. S., 2012, In: HAEMOPHILIA. 18, 3, p. 154-157 3.Research output: SCORING: Contribution to journal › SCORING: Journal article › Research › peer-review
- 2011
Oral health in adult patients with congenital coagulation disorders--a case control study
Ziebolz, D., Stühmer, C., Hornecker, E., Zapf, A., Mausberg, R. F. & Chenot, J. F., 05.2011, In: HAEMOPHILIA. 17, 3, p. 527-531 5 p.Research output: SCORING: Contribution to journal › SCORING: Journal article › Research › peer-review
A comparison between two semi-quantitative bleeding scales for the diagnosis and assessment of bleeding severity in type 1 von Willebrand disease.
Tosetto, A., Rodeghiero, F., Castaman, G., Goodeve, A., Federici, A. B., Batlle, J., Meyer, D., Goudemand, J., Eikenboom, J., Schneppenheim, R., Budde, U., Ingerslev, J., Lethagen, S., Hill, F. G. H. & Peake, I., 2011, In: HAEMOPHILIA. 17, 1, p. 165-166 1.Research output: SCORING: Contribution to journal › SCORING: Journal article › Research › peer-review
Bone density and health-related quality of life in adult patients with severe haemophilia.
Khawaji, M., Astermark, J., Mackensen von, S., Akesson, K. & Berntorp, E., 2011, In: HAEMOPHILIA. 17, 2, p. 304-311 2.Research output: SCORING: Contribution to journal › SCORING: Journal article › Research › peer-review
Management of acute haemarthrosis in haemophilia A without inhibitors: literature review, European survey and recommendations.
Hermans, C., De Moerloose, P., Fischer, K., Holstein, K., Klamroth, R., Lambert, T., Lavigne-Lissalde, G., Perez, R., Richards, M., Dolan, G. & Board, E. H. T. S., 2011, In: HAEMOPHILIA. 17, 3, p. 383-392 3.Research output: SCORING: Contribution to journal › SCORING: Journal article › Research › peer-review
Quality of life in women with bleeding disorders.
Mackensen von, S., 2011, In: HAEMOPHILIA. 17 Suppl 1, p. 33-37Research output: SCORING: Contribution to journal › SCORING: Journal article › Research › peer-review
- 2010
Development and validation of a new questionnaire for the assessment of subjective physical performance in adult patients with haemophilia--the HEP-Test-Q.
Mackensen von, S., Czepa, D., Herbsleb, M. & Hilberg, T., 2010, In: HAEMOPHILIA. 16, 1, p. 170-178 1.Research output: SCORING: Contribution to journal › SCORING: Journal article › Research › peer-review
Severe bleeding diathesis associated with moderate thrombocytopenia - diagnostic workup of seven family members with type 2B von Willebrand's disease.
Zdziarska, J., Iwaniec, T., Skotnicki, A. B., Musia, J., Schneppenheim, R., Budde, U. & Kentouche, K., 2010, In: HAEMOPHILIA. 16, 6, p. 958-962 6.Research output: SCORING: Contribution to journal › SCORING: Journal article › Research › peer-review
The impact of menstrual disorders on quality of life in women with inherited bleeding disorders.
Kadir, R. A., Edlund, M. & Mackensen von, S., 2010, In: HAEMOPHILIA. 16, 5, p. 832-839 5.Research output: SCORING: Contribution to journal › SCORING: Journal article › Research › peer-review
- 2009
Measuring patient-reported outcomes in haemophilia clinical research
Globe, D., Young, N. L., Von Mackensen, S., Bullinger, M., Wasserman, J. & Healthrelated Quality Of Life Expert Working Group Of The International Prophylaxis Study Group, 07.2009, In: HAEMOPHILIA. 15, 4, p. 843-52 10 p.Research output: SCORING: Contribution to journal › SCORING: Review article › Research
Patients', physicians', and pharmacists' preferences towards coagulation factor concentrates to treat haemophilia with inhibitors: results from the COHIBA Study
Scalone, L., Mantovani, L. G., Borghetti, F., Von Mackensen, S. & Gringeri, A., 03.2009, In: HAEMOPHILIA. 15, 2, p. 473-86 14 p.Research output: SCORING: Contribution to journal › SCORING: Journal article › Research › peer-review
Factor VII deficiency: clinical manifestation of 717 subjects from Europe and Latin America with mutations in the factor 7 gene
Herrmann, F. H., Wulff, K., Auerswald, G., Schulman, S., Astermark, J., Batorova, A., Kreuz, W., Pollmann, H., Ruiz-Saez, A., De Bosch, N., Salazar-Sanchez, L. & Greifswald Factor FVII Deficiency Study Group, 01.01.2009, In: HAEMOPHILIA. 15, 1, p. 267-80 14 p.Research output: SCORING: Contribution to journal › SCORING: Journal article › Research › peer-review
- 2008
Quality of life in haemophilia
Gringeri, A. & Von Mackensen, S., 07.2008, In: HAEMOPHILIA. 14 Suppl 3, p. 19-25 7 p.Research output: SCORING: Contribution to journal › SCORING: Journal article › Research › peer-review
Cross-cultural development and psychometric evaluation of a patient-reported health-related quality of life questionnaire for adults with haemophilia.
Rentz, A., Flood, E., Altisent, C., Bullinger, M., Klamroth, R., Garrido, R. P., Scharrer, I., Schramm, W. & Gorina, E., 2008, In: HAEMOPHILIA. 14, 5, p. 1023-1034 5.Research output: SCORING: Contribution to journal › SCORING: Journal article › Research › peer-review
- 2007
Quality of life and sports activities in patients with haemophilia
VON Mackensen, S., 09.2007, In: HAEMOPHILIA. 13 Suppl 2, p. 38-43 6 p.Research output: SCORING: Contribution to journal › SCORING: Review article › Research
Efficacy, safety and tolerability of recombinant factor VIII (REFACTO) in patients with haemophilia A: interim data from a postmarketing surveillance study in Germany and Austria.
Pollmann, H., Externest, D., Ganser, A., Eifrig, B., Kreuz, W., Lenk, H., Pabinger, I., Schramm, W., Schwarz, T. F., Zimmermann, R., Zavazava, N., Oldenburg, J. & Klamroth, R., 2007, In: HAEMOPHILIA. 13, 2, p. 131-143 2.Research output: SCORING: Contribution to journal › SCORING: Journal article › Research › peer-review
The economics of haemophilia prophylaxis: governmental and insurer perspectives. Proceedings of the Second International Prophylaxis Study Group (IPSG) symposium.
Feldman, B. M., Aledort, L., Bullinger, M., Delaney, F. M., Doria, A. S., Funk, S., Giangrande, P., Lundin, B., Manco-Johnson, M., Miners, A., Scriba, P. C., Srivastava, A., Schramm, W. & Blanchette, V. S., 2007, In: HAEMOPHILIA. 13, 6, p. 745-749 6.Research output: SCORING: Contribution to journal › SCORING: Journal article › Research › peer-review
- 2006
Comparing two measures of quality of life for children with haemophilia: the CHO-KLAT and the Haemo-QoL.
Bradley, C. S., Bullinger, M., McCusker, P. J., Wakefield, C. D., Blanchette, V. S. & Young, N. L., 2006, In: HAEMOPHILIA. 12, 6, p. 643-653 6.Research output: SCORING: Contribution to journal › SCORING: Journal article › Research › peer-review
Quality of life assessment in clinical practice in haemophilia treatment.
Gringeri, A., Mantovani, L. & Mackensen von, S., 2006, In: HAEMOPHILIA. 12, 3, p. 22-29 3.Research output: SCORING: Contribution to journal › SCORING: Journal article › Research › peer-review
The Haemo-QoL Index: developing a short measure for health-related quality of life assessment in children and adolescents with haemophilia.
Pollak, E., Mühlan, H., VON Mackensen, S. & Bullinger, M., 2006, In: HAEMOPHILIA. 12, 4, p. 384-392 4.Research output: SCORING: Contribution to journal › SCORING: Journal article › Research › peer-review
- 2004
Disease-specific quality-of-life measurement tools for haemophilia patients
Remor, E., Young, N. L., Von Mackensen, S. & Lopatina, E. G., 10.2004, In: HAEMOPHILIA. 10 Suppl 4, p. 30-4 5 p.Research output: SCORING: Contribution to journal › SCORING: Review article › Research
Development and testing of an instrument to assess the Quality of Life of Children with Haemophilia in Europe (Haemo-QoL)
von Mackensen, S., Bullinger, M. & Haemo-QoL Group, 03.2004, In: HAEMOPHILIA. 10 Suppl 1, p. 17-25 9 p.Research output: SCORING: Contribution to journal › SCORING: Journal article › Research › peer-review
Health status and health-related quality of life of children with haemophilia from six West European countries
Gringeri, A., von Mackensen, S., Auerswald, G., Bullinger, M., Perez Garrido, R., Kellermann, E., Khair, K., Lenk, H., Vicariot, M., Villar, A., Wermes, C. & Haemo-QoL Study, 03.2004, In: HAEMOPHILIA. 10 Suppl 1, p. 26-33 8 p.Research output: SCORING: Contribution to journal › SCORING: Journal article › Research › peer-review
Quality of life assessment in haemophilia
Bullinger, M. & von Mackensen, S., 03.2004, In: HAEMOPHILIA. 10 Suppl 1, p. 9-16 8 p.Research output: SCORING: Contribution to journal › SCORING: Review article › Research
- 2002
Pilot testing of the 'Haemo-QoL' quality of life questionnaire for haemophiliac children in six European countries.
Bullinger, M., von Mackensen, S., Fischer, K., Khair, K., Petersen, C., Ravens-Sieberer, U., Rocino, A., Sagnier, P., Tusell, J. M., van den Berg, M. & Vicariot, M., 2002, In: HAEMOPHILIA. 8, 2, p. 47-54 2.Research output: SCORING: Contribution to journal › SCORING: Journal article › Research › peer-review