An expert consensus to define how higher standards of equitable care for von Willebrand disease can be achieved in the UK and Republic of Ireland

Von Willebrand Disease (VWD) is the most common inherited bleeding disorder. However, recognition of the disease by both the public and healthcare professionals lags behind that of other bleeding disorders, leading to delays in diagnosis and treatment for patients. Updated national guidelines are needed to highlight an appropriate pathway for managing VWD patients in a timelier manner.

[1]  P. James,et al.  Management of patients with elevated Self-BAT scores or other bleeding symptoms , 2022, Canadian Family Physician Médecin de famille canadien.

[2]  M. Holland,et al.  The lived experience of women with a bleeding disorder: A systematic review , 2022, Research and practice in thrombosis and haemostasis.

[3]  K. Khair,et al.  European principles of care for women and girls with inherited bleeding disorders , 2021, Haemophilia : the official journal of the World Federation of Hemophilia.

[4]  F. Leebeek,et al.  Major differences in clinical presentation, diagnosis and management of men and women with autosomal inherited bleeding disorders , 2021, EClinicalMedicine.

[5]  R. Mustafa,et al.  ASH ISTH NHF WFH 2021 guidelines on the management of von Willebrand disease. , 2021, Blood advances.

[6]  R. Mustafa,et al.  ASH ISTH NHF WFH 2021 guidelines on the diagnosis of von Willebrand disease. , 2021, Blood advances.

[7]  M. Franchini,et al.  Prophylactic management of patients with von Willebrand disease , 2021, Therapeutic advances in hematology.

[8]  P. James,et al.  Sexism in the management of bleeding disorders , 2020, Research and practice in thrombosis and haemostasis.

[9]  P. James.  Women and bleeding disorders: diagnostic challenges. , 2020, Hematology. American Society of Hematology. Education Program.

[10]  W. V. van Heerde,et al.  Diagnosis of rare bleeding disorders , 2020, Haemophilia : the official journal of the World Federation of Hemophilia.

[11]  E. Mauser-Bunschoten,et al.  Clinical management of woman with bleeding disorders: A survey among European haemophilia treatment centres , 2020, Haemophilia : the official journal of the World Federation of Hemophilia.

[12]  J. O’Donnell,et al.  New developments in von Willebrand disease , 2020, British journal of haematology.

[13]  A. Paterson,et al.  Bleeding assessment tools to predict von Willebrand disease: Utility of individual bleeding symptoms , 2019, Research and practice in thrombosis and haemostasis.

[14]  R. Schutgens,et al.  Reliability and Feasibility of the Self-Administered ISTH-Bleeding Assessment Tool , 2019, TH Open.

[15]  K. V. van Galen,et al.  Barriers and challenges faced by women with congenital bleeding disorders in Europe: Results of a patient survey conducted by the European Haemophilia Consortium , 2019, Haemophilia : the official journal of the World Federation of Hemophilia.

[16]  G. Elyamany,et al.  Routine Preoperative Coagulation Tests in Children Undergoing Elective Surgery or Invasive Procedures: Are They Still Necessary? , 2019, Clinical medicine insights. Blood disorders.

[17]  P. James,et al.  Significant gynecological bleeding in women with low von Willebrand factor levels. , 2018, Blood advances.

[18]  S. Vesely,et al.  Von Willebrand disease screening in women undergoing hysterectomy for heavy menstrual bleeding , 2017, Haemophilia : the official journal of the World Federation of Hemophilia.

[19]  P. James,et al.  Relative contributions of bleeding scores and iron status on health‐related quality of life in von Willebrand disease: a cross‐sectional study , 2017, Haemophilia : the official journal of the World Federation of Hemophilia.

[20]  P. James,et al.  Generation and optimization of the self‐administered bleeding assessment tool and its validation as a screening test for von Willebrand disease , 2013, Haemophilia : the official journal of the World Federation of Hemophilia.

[21]  B. Coller,et al.  ISTH/SSC bleeding assessment tool: a standardized questionnaire and a proposal for a new bleeding score for inherited bleeding disorders , 2010, Journal of thrombosis and haemostasis : JTH.

[22]  P. James,et al.  Generation and validation of the Condensed MCMDM‐1VWD Bleeding Questionnaire for von Willebrand disease , 2008, Journal of thrombosis and haemostasis : JTH.

[23]  H. Watson,et al.  Guidelines on the assessment of bleeding risk prior to surgery or invasive procedures , 2008, British journal of haematology.

[24]  J. Prchal,et al.  Aberrant expression of microRNA in polycythemia vera , 2008, Haematologica.