This work is licensed under the Creative Commons Attribution-NonCommercial-NoDerivatives 3.0 License.
Callaghan MU, Kaufman RJ. Cellular processing of factor VIII and factor IX. In: Lee C, Berntorp E, Hoots K, eds. Textbook of Haemophilia, 2nd edn. 2010. Oxford, UK: Wiley-Blackwell.CallaghanMUKaufmanRJCellular processing of factor VIII and factor IXIn:LeeCBerntorpEHootsKeds.Textbook of Haemophilia2nd edn.2010Oxford, UKWiley-Blackwell10.1002/9781444318555.ch2Search in Google Scholar
Kitchen S, de Paula Cereta F, de Lima Montalvão SA, et al. Laboratory diagnosis and monitoring. WFH Guidelines for the Management of Hemophilia, 3rd edition. Haemophilia 2020; 26(S6): 35–48. doi: 10.1111/hae.14046.KitchenSde Paula CeretaFde Lima MontalvãoSALaboratory diagnosis and monitoring. WFH Guidelines for the Management of Hemophilia, 3rd editionHaemophilia202026S6354810.1111/hae.1404632744769Open DOISearch in Google Scholar
Hatton C, Hay D, Keeling DM. Haemostasis, abnormal bleeding and anticoagulant therapy. In: Hatton C, Hay D, Keeling DM, eds. Haematology: Lecture Notes, 10th edn. 2018. Chichester, UK: Wiley-Blackwell.HattonCHayDKeelingDMHaemostasis, abnormal bleeding and anticoagulant therapyIn:HattonCHayDKeelingDMeds.Haematology: Lecture Notes10th edn.2018Chichester, UKWiley-BlackwellSearch in Google Scholar
Stonebraker JS, Bolton-Maggs PHB, Brooker M, et al. The World Federation of Hemophilia Annual Global Survey 1999–2018. Haemophilia 2020; 27: 591–600. doi: 10.1111/hae.14012.StonebrakerJSBolton-MaggsPHBBrookerMThe World Federation of Hemophilia Annual Global Survey 1999–2018Haemophilia20202759160010.1111/hae.1401232497379Open DOISearch in Google Scholar
Iorio A, Stonebraker JS, Chambost H, Makris M, Coffin D, Herr C. Establishing the male prevalence and prevalence at birth of hemophilia: A meta-analytic approach using national registries. Ann Intern Med 2019; 171(8): 540–546]. doi: 10.7326/M19-1208.IorioAStonebrakerJSChambostHMakrisMCoffinDHerrCEstablishing the male prevalence and prevalence at birth of hemophilia: A meta-analytic approach using national registriesAnn Intern Med2019171854054610.7326/M19-120831499529Open DOISearch in Google Scholar
Pipe SW, Carcao M, Chew K, et al. Hemostatic agents. WFH Guidelines for the Management of Hemophilia, 3rd edition. Haemophilia 2020; 26(S6): 59–71. doi: 10.1111/hae.14046.PipeSWCarcaoMChewKHemostatic agents. WFH Guidelines for the Management of Hemophilia, 3rd editionHaemophilia202026S6597110.1111/hae.14046Open DOISearch in Google Scholar
Francini M, Mannucci M. Non-factor replacement therapy for haemophilia: a current update. Blood Transfus 2018; 16: 457–61. doi: 10.2450/2018.0272-17.FranciniMMannucciMNon-factor replacement therapy for haemophilia: a current updateBlood Transfus2018164576110.2450/2018.0272-17612523029517971Open DOISearch in Google Scholar
Garrison LP, Kleinermans D. Is the world ready for gene therapy? Haemophilia 2022; 28(Supp 2): 5–8. doi: 10.1111/hae.14439.GarrisonLPKleinermansDIs the world ready for gene therapy?Haemophilia202228Supp 25810.1111/hae.1443935318781Open DOISearch in Google Scholar
DeKoven M, Karkare S, Lee WC, et al. Impact of haemophilia with inhibitors on caregiver burden in the United States. Haemophilia 2014; 20: 822–830. doi: 10.1111/hae.12501.DeKovenMKarkareSLeeWCImpact of haemophilia with inhibitors on caregiver burden in the United StatesHaemophilia20142082283010.1111/hae.1250125273645Open DOISearch in Google Scholar
Khair K, Kulkowska A, Myrin Westersson L, et al. The burden of bleeds and other clinical determinants on caregivers of children with haemophilia (the BBC Study). Haemophilia 2019; 25: 416–423. doi: 10.1111/hae.13736.KhairKKulkowskaAMyrin WesterssonLThe burden of bleeds and other clinical determinants on caregivers of children with haemophilia (the BBC Study)Haemophilia20192541642310.1111/hae.1373630925018Open DOISearch in Google Scholar
Miller CH, Bean CJ. Genetic causes of haemophilia in women and girls. Haemophilia 2021; 27: e164–e179. doi: 10.1111/hae.14186.MillerCHBeanCJGenetic causes of haemophilia in women and girlsHaemophilia202127e164e17910.1111/hae.14186813247433314404Open DOISearch in Google Scholar
Shoukat HMH, Ghulam Ghous G, Tarar ZI, Shoukat MM, Ajma N. Skewed inactivation of X chromosome: a cause of hemophilia manifestation in carrier females. Cureus 2020; 12(10):e11216. doi: 10.7759/cureus.11216.ShoukatHMHGhulam GhousGTararZIShoukatMMAjmaNSkewed inactivation of X chromosome: a cause of hemophilia manifestation in carrier femalesCureus20201210e1121610.7759/cureus.11216770415633269146Open DOISearch in Google Scholar
Kasper CK, Lin JC. How many carriers are there? Haemophilia 2010; 16(5): 842. doi: 10.1111/j.1365-2516.2010.02210.xKasperCKLinJCHow many carriers are there?Haemophilia201016584210.1111/j.1365-2516.2010.02210.x20148976Open DOISearch in Google Scholar
van Galen K, Lavin M, Skouw-Rasmussen N, et al.; European Haemophilia Consortium (EHC), European Association for Haemophilia and Allied Disorders (EAHAD). European principles of care for women and girls with inherited bleeding disorders. Haemophilia 2021; 27(5): 837–847. doi: 10.1111/hae.14379.van GalenKLavinMSkouw-RasmussenNEuropean Haemophilia Consortium (EHC), European Association for Haemophilia and Allied Disorders (EAHAD)European principles of care for women and girls with inherited bleeding disordersHaemophilia202127583784710.1111/hae.1437934343384Open DOISearch in Google Scholar
Weyand AC, James PD. Sexism in the management of bleeding disorders. Res Pract Thromb Haemost 2021; 5: 51–54. doi: 10.1002/rth2.12468.WeyandACJamesPDSexism in the management of bleeding disordersRes Pract Thromb Haemost20215515410.1002/rth2.12468784507033537529Open DOISearch in Google Scholar
Khair K, Steadman L, Chaplin S, et al. Parental perspectives on gene therapy for children with haemophilia: the Exigency study. Haemophilia 2021; 27(1): 120–128. doi: 10.1111/hae.14188.KhairKSteadmanLChaplinSParental perspectives on gene therapy for children with haemophilia: the Exigency studyHaemophilia202127112012810.1111/hae.1418833216422Open DOISearch in Google Scholar
Fletcher S, Jenner K, Holland M, Chaplin S, Khair K. An exploration of why men with severe haemophilia might not want gene therapy: the Exigency study. Haemophilia 2021; 27(5): 760–768. doi: 10.1111/hae.14378.FletcherSJennerKHollandMChaplinSKhairKAn exploration of why men with severe haemophilia might not want gene therapy: the Exigency studyHaemophilia202127576076810.1111/hae.1437834265145Open DOISearch in Google Scholar
Fletcher S, Jenner K, Pembroke L, Holland M, Khair K. The experiences of people with haemophilia, and their families, of gene therapy in a clinical trial setting: regaining control, the Exigency study. Orphanet J Rare Dis 2022; 17: 155. doi: 10.1186/s13023-022-02256-2.FletcherSJennerKPembrokeLHollandMKhairKThe experiences of people with haemophilia, and their families, of gene therapy in a clinical trial setting: regaining control, the Exigency studyOrphanet J Rare Dis20221715510.1186/s13023-022-02256-2898174735379267Open DOISearch in Google Scholar
Stake RE. The Art of Case Study Research. 1995. London: Sage Publications.StakeREThe Art of Case Study Research1995LondonSage PublicationsSearch in Google Scholar
Schwandt TA, Gates EF. Case study methodology. In Denzin NK, Lincoln YS, eds. The SAGE Handbook of Qualitative Research, 5th edn. 2017. London: Sage Publications.SchwandtTAGatesEFCase study methodologyInDenzinNKLincolnYSeds.The SAGE Handbook of Qualitative Research5th edn.2017LondonSage PublicationsSearch in Google Scholar
Archibald MM, Ambagtsheer RC, Casey MG, Lawless M. Using Zoom videoconferencing for qualitative data collection: perceptions and experiences of researchers and participants. International Journal of Qualitative Methods 2019; 18: 1–8. doi: 10.1177/1609406919874596.ArchibaldMMAmbagtsheerRCCaseyMGLawlessMUsing Zoom videoconferencing for qualitative data collection: perceptions and experiences of researchers and participantsInternational Journal of Qualitative Methods2019181810.1177/1609406919874596Open DOISearch in Google Scholar
S Fletcher. Seeing the bigger picture: Qualitative research in the Zoom® age. J Haem Pract 2021; 8(1): 141–144. doi: 10.2478/jhp-2021-0019.FletcherSSeeing the bigger picture: Qualitative research in the Zoom® ageJ Haem Pract20218114114410.2478/jhp-2021-0019Open DOISearch in Google Scholar
Alhojailan MI. Thematic analysis: A critical review of its process and evaluation. West East Journal of Social Sciences 2012; 1(1): 39–47.AlhojailanMIThematic analysis: A critical review of its process and evaluationWest East Journal of Social Sciences2012113947Search in Google Scholar
NHS Health Research Authority. Is My Study Research? October 2017. Available from http://www.hra-decisiontools.org.uk/research/ (accessed 3 January 2022).NHS Health Research AuthorityIs My Study Research?October2017Available from http://www.hra-decisiontools.org.uk/research/ (accessed 3 January 2022).Search in Google Scholar
Denny C, Grady C. Research involving women. In: Emanuel EJ, Grady C, Crouch RA, et al., eds. The Oxford Textbook of Clinical Research Ethics. 2008. Oxford, UK: Oxford University Press.DennyCGradyCResearch involving womenIn:EmanuelEJGradyCCrouchRAeds.The Oxford Textbook of Clinical Research Ethics2008Oxford, UKOxford University Press10.1093/oso/9780195168655.003.0039Search in Google Scholar
Steinberg JR, Turner BE, Weeks BT, et al. Analysis of female enrollment and participant sex by burden of disease in US clinical trials between 2000 and 2020. JAMA Netw Open 2021; 4(6): e2113749. doi: 10.1001/jamanetworkopen.2021.13749.SteinbergJRTurnerBEWeeksBTAnalysis of female enrollment and participant sex by burden of disease in US clinical trials between 2000 and 2020JAMA Netw Open202146e211374910.1001/jamanetworkopen.2021.13749821416034143192Open DOISearch in Google Scholar
Mastroianni AC, Faden R, Federman D. Executive summary. In Mastroianni AC, Faden R, Federman, D. Women and Health Research: Ethical and Legal Issues of Including Women in Clinical Studies, vol. 1. 1994. Washington (DC): National Academies Press.MastroianniACFadenRFedermanDExecutive summaryInMastroianniACFadenRFedermanD.Women and Health Research: Ethical and Legal Issues of Including Women in Clinical Studies11994Washington (DC)National Academies Press10.1136/bmj.309.6961.1095Search in Google Scholar
Sterling TR, Vlahov AJ, Astemborski J, et al. Initial plasma HIV-1 RNA levels and progression to AIDS in women and men. N Engl J Med 2001; 344: 720–725. doi: 10.1056nejm2000103083441003.SterlingTRVlahovAJAstemborskiJInitial plasma HIV-1 RNA levels and progression to AIDS in women and menN Engl J Med200134472072510.1056nejm2000103083441003Open DOISearch in Google Scholar
Campaigne BMN, Wishner KL. Gender-specific health care in diabetes melitus. J Gend Specif Med 2000; 3(1): 51–58. PMID: 11253237.CampaigneBMNWishnerKLGender-specific health care in diabetes melitusJ Gend Specif Med2000315158PMID: 11253237.Search in Google Scholar
Walsh SJ, Rau LM. Autoimmune diseases: a leading cause of death among young and middle-aged women in the United States. Am J Public Health 2000; 90: 1463–1466. doi: 10.2105/ajph90.9.1463.WalshSJRauLMAutoimmune diseases: a leading cause of death among young and middle-aged women in the United StatesAm J Public Health2000901463146610.2105/ajph90.9.1463Open DOISearch in Google Scholar
Thomas R, Page F, Khosia R, Vester A, Hana T, Say L. Ensuring an inclusive global health agenda for transgender people. Bull World Health Organ 2017; 95: 154–156. doi: 10.2471/blt.16.183913.ThomasRPageFKhosiaRVesterAHanaTSayLEnsuring an inclusive global health agenda for transgender peopleBull World Health Organ20179515415610.2471/blt.16.183913532794228250518Open DOISearch in Google Scholar
Joseph A, Cliffe C, Hillyard M, Majeed A. Gender identity and the management of the transgender patient: a guide for non-specialists. J R Soc Med 2017; 110: 144–52. doi: 10.1177/0141076817696054.JosephACliffeCHillyardMMajeedAGender identity and the management of the transgender patient: a guide for non-specialistsJ R Soc Med20171101445210.1177/0141076817696054540752028382847Open DOISearch in Google Scholar
Valk C. A transgender person with haemophiia. J Haem Pract 2018; 5(1): 147–151. doi: 10.17225/jhp00128.ValkCA transgender person with haemophiiaJ Haem Pract20185114715110.17225/jhp00128Open DOISearch in Google Scholar
Sanigorska A, Chaplin S, Holland M, Khair K, Pollard D. The lived experience of women with a bleeding disorder: A systematic review. Res Pract Thromb Haemost 2022; 6: e12652. doi: 10.1002/rth2.12652.SanigorskaAChaplinSHollandMKhairKPollardDThe lived experience of women with a bleeding disorder: A systematic reviewRes Pract Thromb Haemost20226e1265210.1002/rth2.12652881366335141459Open DOISearch in Google Scholar
van Galen KPM, d’Oiron R, James P, et al. A new hemophilia carrier nomenclature to define hemophilia in women and girls: Communication from the SSC of the ISTH. J Thromb Haemost 2021; 19: 1883–1887. doi: 10.1111/jth.15397.van GalenKPMd’OironRJamesPA new hemophilia carrier nomenclature to define hemophilia in women and girls: Communication from the SSC of the ISTHJ Thromb Haemost2021191883188710.1111/jth.15397836171334327828Open DOISearch in Google Scholar
Nissen T, Wynn R. The clinical case report: a review of its merits and limitations. BMC Res Notes 2014, 7: 264. doi: 10.1186/1756-0500-7-264.NissenTWynnRThe clinical case report: a review of its merits and limitationsBMC Res Notes2014726410.1186/1756-0500-7-264400135824758689Open DOISearch in Google Scholar
Carey JC. The importance of case reports in advancing scientific knowledge of rare diseases. Adv Exp Med Biol 2010; 686: 77–86. doi: 10.1007/978-90-481-9485-8_5.CareyJCThe importance of case reports in advancing scientific knowledge of rare diseasesAdv Exp Med Biol2010686778610.1007/978-90-481-9485-8_520824440Open DOISearch in Google Scholar
Nakamura T, Igarashi H, Ito T, Jensen RT. Important of case-reports/series, in rare diseases: Using neuroendocrine tumors as an example. World J Clin Cases 2014; 2(11): 608–613. doi: 10.12998/wjcc.v2.i11.608.NakamuraTIgarashiHItoTJensenRTImportant of case-reports/series, in rare diseases: Using neuroendocrine tumors as an exampleWorld J Clin Cases201421160861310.12998/wjcc.v2.i11.608423342425405184Open DOISearch in Google Scholar
Khair K, Pollard D, Steadman L, Jenner K, Chaplin S. The views of women with bleeding disorders: Results from the Cinderella study. Haemophilia 2022;28(2): 316–325. doi: 10.1111/hae.14514.KhairKPollardDSteadmanLJennerKChaplinSThe views of women with bleeding disorders: Results from the Cinderella studyHaemophilia202228231632510.1111/hae.1451435152515Open DOISearch in Google Scholar