&lt;p&gt;Potential Undiagnosed VWD Or Other Mucocutaneous Bleeding Disorder Cases Estimated From Private Medical Insurance Claims&lt;/p&gt;

Sidonio, Robert F.; Zia, Ayesha; Fallaize, Dana

doi:10.2147/jbm.s224683

Cited by 11 publications

(8 citation statements)

References 45 publications

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“…21,22 A major challenge for affected patients is achieving an accurate and timely diagnosis. [23][24][25][26] Patients experience delays of 15 years or more from the onset of bleeding symptoms to a VWD diagnosis, and confusion remains about the distinction and importance of the types and subtypes described above. 27 Barriers to an accurate diagnosis include a lack of understanding of the difference between normal and abnormal bleeding symptoms, lack of clarity around an appropriate diagnostic approach, and limited availability and expertise of specialized laboratory testing.…”

Section: Description Of the Health Problemmentioning

confidence: 99%

ASH ISTH NHF WFH 2021 guidelines on the diagnosis of von Willebrand disease

et al. 2021

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Background: von Willebrand disease (VWD) is the most common inherited bleeding disorder known in humans. Accurate and timely diagnosis presents numerous challenges. Objective: These evidence-based guidelines of the American Society of Hematology (ASH), the International Society on Thrombosis and Haemostasis (ISTH), the National Hemophilia Foundation (NHF), and the World Federation of Hemophilia (WFH) are intended to support patients, clinicians, and other health care professionals in their decisions about VWD diagnosis. Methods: ASH, ISTH, NHF, and WFH established a multidisciplinary guideline panel that included 4 patient representatives and was balanced to minimize potential bias from conflicts of interest. The Outcomes and Implementation Research Unit at the University of Kansas Medical Center (KUMC) supported the guideline-development process, including performing or updating systematic evidence reviews up to 8 January 2020. The panel prioritized clinical questions and outcomes according to their importance for clinicians and patients. The panel used the Grading of Recommendations Assessment, Development and Evaluation (GRADE) approach, including GRADE Evidence-to-Decision frameworks, to assess evidence and make recommendations, which were subsequently subject to public comment. Results: The panel agreed on 11 recommendations. Conclusions: Key recommendations of these guidelines include the role of bleeding-assessment tools in the assessment of patients suspected of VWD, diagnostic assays and laboratory cutoffs for type 1 and type 2 VWD, how to approach a type 1 VWD patient with normalized levels over time, and the role of genetic testing vs phenotypic assays for types 2B and 2N. Future critical research priorities are also identified.

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Section: Description Of the Health Problemmentioning

confidence: 99%

ASH ISTH NHF WFH 2021 guidelines on the diagnosis of von Willebrand disease

et al. 2021

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“…In addition, in patients with recurrent joint bleeding, the detrimental effect on long-term joint outcomes may be comparable with moderate/severe hemophilia [19]. Thus, raising awareness of the disease is important for timely recognition and treatment of bleeds as well as considerations for prophylaxis in patients with VWD who have severe and frequent bleeds [21,22].…”

Section: Introductionmentioning

confidence: 99%

Addressing unmet needs in rare bleeding disorders: selected poster extracts of recent research in hemophilia A and von Willebrand disease presented at the 14th Annual Congress of the European Association for Haemophilia and Allied Disorders (EAHAD) (Feb 3–5, 2021; virtual congress)

Allen

Khair

et al. 2021

Expert Review of Hematology

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“…4 However, the diagnosis is usually not made until adulthood. 5 Multidisciplinary adolescent hematology clinics have helped closed the gap between HMB onset and BD diagnosis, 6 but only 5% of women with HMB present to a hematologist 7 or get screened for common BDs. 8 At any age, a lack of patient and provider awareness causes a delay in diagnosis and bleeding complications during the reproductive lifespan of women with BD.…”

Section: Introductionmentioning

confidence: 99%

Standardizing care to manage bleeding disorders in adolescents with heavy menses—A joint project from the ISTH pediatric/neonatal and women's health SSCs

Zia

Kouides

Khodyakov

et al. 2020

Journal of Thrombosis and Haemostasis

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Background: Bleeding disorders (BD) are under-recognized in adolescents with heavy menstrual bleeding (HMB). Objectives: The lack of clinical guidelines and variable symptomatic management of HMB created the imperative to standardize HMB care to identify and manage BD in adolescents. Methods: We convened an international working group (WG), utilized the results of a literature review to define knowledge gaps in HMB care, and used the collective clinical experience of the WG to develop care considerations for adolescents with BD and HMB. We then solicited input on the appropriateness of HMB care considerations from expert stakeholders representing hematology, adolescent medicine, and obstetrics-gynecology. We conducted an expert panel online, using the ExpertLens platform. During a three-round online modified-Delphi process, the expert panel rated the appropriateness of 21 care considerations using a 9-point scale to designate care as appropriate (7-9), uncertain (4-6), or inappropriate (1-3) covering screening for

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<p>Potential Undiagnosed VWD Or Other Mucocutaneous Bleeding Disorder Cases Estimated From Private Medical Insurance Claims</p>

Cited by 11 publications

References 45 publications

ASH ISTH NHF WFH 2021 guidelines on the diagnosis of von Willebrand disease

ASH ISTH NHF WFH 2021 guidelines on the diagnosis of von Willebrand disease

Addressing unmet needs in rare bleeding disorders: selected poster extracts of recent research in hemophilia A and von Willebrand disease presented at the 14th Annual Congress of the European Association for Haemophilia and Allied Disorders (EAHAD) (Feb 3–5, 2021; virtual congress)

Standardizing care to manage bleeding disorders in adolescents with heavy menses—A joint project from the ISTH pediatric/neonatal and women's health SSCs

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