Accesso libero

Monitoring to improve quality of life in women with bleeding disorders

INFORMAZIONI SU QUESTO ARTICOLO

Cita

World Federation of Hemophilia. Report on the Annual Global Survey 2019. October 2020. Available from https://www1.wfh.org/publications/files/pdf-1806.pdf (accessed 23 August 2022). World Federation of Hemophilia Report on the Annual Global Survey 2019 October 2020 Available from https://www1.wfh.org/publications/files/pdf-1806.pdf (accessed 23 August 2022). Search in Google Scholar

World Federation of Hemophilia. Report on the Annual Global Survey 2009. March 2011. Available from https://www1.wfh.org/publications/files/pdf-1428.pdf (accessed 23 August 2022). World Federation of Hemophilia Report on the Annual Global Survey 2009 March 2011 Available from https://www1.wfh.org/publications/files/pdf-1428.pdf (accessed 23 August 2022). Search in Google Scholar

Noone D, Skouw-Rasmussen N, Lavin M, van Galen KPM, Kadir RA. Barriers and challenges faced by women with congenital bleeding disorders in Europe: Results of a patient survey conducted by the European Haemophilia Consortium. Haemophilia 2019; 25(3): 468–474. doi: 10.1111/hae.13722. NooneD Skouw-RasmussenN LavinM van GalenKPM KadirRA Barriers and challenges faced by women with congenital bleeding disorders in Europe: Results of a patient survey conducted by the European Haemophilia Consortium Haemophilia 2019 25 3 468 474 10.1111/hae.13722 31034126 Open DOISearch in Google Scholar

Di Michele DM, Gibb C, Lefkowitz JM, et al. Severe and moderate haemophilia A and B in US females. Haemophilia 2014; 20(2): e136–143. doi: 10.1111/hae.12364. Di MicheleDM GibbC LefkowitzJM Severe and moderate haemophilia A and B in US females Haemophilia 2014 20 2 e136 143 10.1111/hae.12364 24533955 Open DOISearch in Google Scholar

Viprey M, Volot F, Falaise C, et al., on behalf of FranceCoag. Age at diagnosis is delayed in women/girls with haemophilia compared to men/boys: a FranceCoag report. Abstract MED-FP-031 (501). World Federation of Hemophlia Global Virtual Summit June 2020. Haemophilia 2020; 26(S4): 79. doi: 10.1111/hae.13941. VipreyM VolotF FalaiseC on behalf of FranceCoag Age at diagnosis is delayed in women/girls with haemophilia compared to men/boys: a FranceCoag report. Abstract MED-FP-031 (501). World Federation of Hemophlia Global Virtual Summit June 2020 Haemophilia 2020 26 S4 79 10.1111/hae.13941 32478881 Open DOISearch in Google Scholar

Arya S, Wilton P, Page D, et al. “They don’t really take my bleeds seriously”: Barriers to care for women with inherited bleeding disorders. J Thromb Haemost 2021; 19: 1506–1514. doi:10.1111/jth.15311. AryaS WiltonP PageD “They don’t really take my bleeds seriously”: Barriers to care for women with inherited bleeding disorders J Thromb Haemost 2021 19 1506 1514 10.1111/jth.15311 33774912 Open DOISearch in Google Scholar

Criado Perez C. Invisible Women: Exposing Data Bias in a World Designed for Men. 2019. London: Chatto & Windus. Criado PerezC Invisible Women: Exposing Data Bias in a World Designed for Men 2019 London Chatto & Windus Search in Google Scholar

Government of Ireland. Period Poverty in Ireland. Discussion Paper. Period Poverty Sub-Committee, National Strategy for Women and Girls, 2017–2020. February 2021. Available from https://www.gov.ie/en/publication/264f4-period-poverty-in-ireland-discussion-paper-period-poverty-sub-committee-national-strategy-for-women-and-girls-20172020-february-2021/ (accessed 23 August 2022). Government of Ireland Period Poverty in Ireland. Discussion Paper. Period Poverty Sub-Committee, National Strategy for Women and Girls, 2017–2020 February 2021 Available from https://www.gov.ie/en/publication/264f4-period-poverty-in-ireland-discussion-paper-period-poverty-sub-committee-national-strategy-for-women-and-girls-20172020-february-2021/ (accessed 23 August 2022). Search in Google Scholar

Citla-Sridhar D, Sidonio RF Jr, Ahuja SP. Bone health in haemophilia carriers and persons with von Willebrand disease: A large database analysis. Haemophilia 2022 Apr 13. doi: 10.1111/hae.14565. Online ahead of print Citla-SridharD SidonioRFJr AhujaSP Bone health in haemophilia carriers and persons with von Willebrand disease: A large database analysis Haemophilia 2022 Apr 13 10.1111/hae.14565 Online ahead of print 35416396 Open DOISearch in Google Scholar

Canadian Hemophilia Society. CBDR – Canadian Bleeding Disorder Registry. MyCBDR. Available from https://www.hemophilia.ca/mycbdr/ (accessed 23 August 2022). Canadian Hemophilia Society CBDR – Canadian Bleeding Disorder Registry MyCBDR Available from https://www.hemophilia.ca/mycbdr/ (accessed 23 August 2022). Search in Google Scholar

Doncarli A, Demiguel V, Guseva Canu I, et al. FranceCoag: a 22-year prospective follow-up of the national French cohort of patients with inherited bleeding disorders. Eur J Epidemiol 2019; 34: 521–532. doi: 10.1007/s10654-018-0468-7. DoncarliA DemiguelV Guseva CanuI FranceCoag: a 22-year prospective follow-up of the national French cohort of patients with inherited bleeding disorders Eur J Epidemiol 2019 34 521 532 10.1007/s10654-018-0468-7 30515664 Open DOISearch in Google Scholar

Renault NK, Howell RE, Robinson KS, Greer WL. Qualitative assessment of the emotional and behavioural responses of haemophilia A carriers to negative experiences in their medical care. Haemophilia 2011; 17(2): 237–45. doi: 10.1111/j.1365-2516.2010.02424.x. RenaultNK HowellRE RobinsonKS GreerWL Qualitative assessment of the emotional and behavioural responses of haemophilia A carriers to negative experiences in their medical care Haemophilia 2011 17 2 237 45 10.1111/j.1365-2516.2010.02424.x 21118331 Open DOISearch in Google Scholar

O’Mahony B. Electronic health records – the patient perspective. Abstract SPK026. Speaker Abstracts – Virtual Congress of the European Association for Haemophilia and Allied Disorders 2021, 3–5 February 2021. Haemophilia 2021; 27(S2): 13. doi: 10.1111/hae.14237. O’MahonyB Electronic health records – the patient perspective. Abstract SPK026. Speaker Abstracts – Virtual Congress of the European Association for Haemophilia and Allied Disorders 2021, 3–5 February 2021 Haemophilia 2021 27 S2 13 10.1111/hae.14237 33528848 Open DOISearch in Google Scholar

Chai-Adisaksopha C, Noone D, Curtis R, et al. Non-severe haemophilia: Is it benign? – Insights from the PROBE study. Haemophilia 2021; 27 Suppl 1: 17–24. doi: 10.1111/hae.14105. Chai-AdisaksophaC NooneD CurtisR Non-severe haemophilia: Is it benign? – Insights from the PROBE study Haemophilia 2021 27 Suppl 1 17 24 10.1111/hae.14105 32870546 Open DOISearch in Google Scholar

eISSN:
2055-3390
Lingua:
Inglese
Frequenza di pubblicazione:
Volume Open
Argomenti della rivista:
Medicine, Basic Medical Science, other, Clinical Medicine, Pharmacy, Pharmacology