The following collection is available to offer support and awareness of diagnosed and undiagnosed women (who show symptoms) of a bleeding disorder facing inequity in healthcare.
*Please note, some papers are only available through purchase and/or a subscription with the publisher. But the abstracts and other partial information are available free of cost. These papers have been identified for your convenience.
The Views of Women with Bleeding Disorders: Results from the Cinderella Study
K Khair, D Pollard, L Steadman, K Jenner… - Haemophilia, 2022 - Wiley Online Library
Despite therapeutic advances in bleeding disorder treatment, over the past 20 years women with bleeding disorders have reported delayed diagnosis, impaired quality… symptoms were heavy periods (81%) and…
Cited by 5 Related articles All 3 versions
LIMITATIONS: The full version of this article is unavailable without purchase and/or subscription to the publisher.
Bleeding Disorders in Women and Girls: State of the Science and CDC Collaborative Programs
V Byams, C Miller, F Bethea… - Journal of Women's Health, 2022 - Mary Ann liebert, Inc. publishers
Women and girls with bleeding disorders experience abnormal and excessive bleeding that can negatively impact their overall health and quality of life… an overview of the biology, types, clinical care…
Cited by 4 Related articles All 3 versions
LIMITATIONS: The full version of this article is unavailable without purchase and/or subscription to the publisher.
The Lived Experience of Women with a Bleeding Disorder: a Systematic Review
Anna Sanigorska BSc, RN, Steve Chaplin BPharm, MSc… - Research & Practice in Thrombosis & Haemostasis, 2022 - ScienceDirect.com
This review provides a clear picture that the lived experience of women with bleeding disorders is negatively affected by lack of support from health providers… There is a need for further studies to confirm these findings.
Gynaecological Management of Women with Inherited Bleeding Disorders: a UK Haemophilia Centres Doctors' Organisation Guideline
N Curry, L Bowles, T Clark, G Lowe, J Mainwaring, S Mangles… - Wiley Online Library, 2022
…many women with an undiagnosed bleeding disorder will present to gynaecology services with heavy menstrual bleeding…
Cited by 4 Related articles All 3 versions
LIMITATIONS: The full version of this article is unavailable without purchase and/or subscription to the publisher.
Outcomes and Management of Pregnancy in Women with Bleeding Disorder of Unknown Cause
D Castle, M Desborough, M Kemp, G Lowe, W Thomas, S Obaji - Wiley Online Library, 2022
Patients with a bleeding tendency with normal laboratory tests have been described as having an unclassified bleeding disorder or bleeding disorder of unknown cause…
Cited by 1 Related articles All 4 versions
LIMITATIONS: The full version of this article is unavailable without purchase and/or subscription to the publisher.
Building the foundation for a community-generated national research blueprint for inherited bleeding disorders: Research to Advance the Health of People with Inherited Bleeding Disorders with the Potential to Menstruate
M Baldwin, H Ahmadzia, D Bartlett, D Bensen-Kennedy… - Taylor & Francis, 2023
Up to 1% of cisgender women and girls have an inherited bleeding disorder… researchers worked together to identify the research that would most improve the lives…
“If I Wasn't a Girl”: Experiences of Adolescent Girls with Heavy Menstrual Bleeding (HMB) and Inherited Bleeding Disorders
M Parker, M Hannah, A Zia - Research and Practice in Thrombosis and…, 2022 - Elsevier
…study was to describe the experiences of adolescents with HMB with a BD…We identified the following themes in nine participants: anxiety…
Reproductive Tract Bleeding in Adolescent and Young Adult (AYA) Females with Inherited Bleeding Disorders (IBD’s): An Under-Appreciated Problem
N Swaminathan, A Sharathkumar, t dowlut-mcelroy - Journal of Pediatric & adolescent gynecology - Elsevier, 2022
The clinical spectrum of gynecologic and obstetric bleeding in AYA with IBDs ranges from heavy menstrual bleeding, ovulation bleeding, and surgical bleeding to miscarriages and life-threatening PPH.
Big Picture Initiatives in Bleeding Disorders
A Rauch, LA Valentino, K Mills, ML Witkop… - Wiley Online Library, 2022
…create a national research blueprint agenda, led by the National Hemophilia Foundation (NHF), enhancing patient-centric principles, accelerate research progress and address important gaps in care.
Monitoring to Improve of Quality of Life in Women with Bleeding Disorders
D Noone, R d'Oiron - The Journal of Haemophilia Practice - sciendo.com
The inclusion of women and girls with bleeding disorders in… Women with factor VIII (FVIII)
and factor IX (FIX) levels less… and other rare bleeding disorders are being recorded more…
An Update of Human Immunodeficiency Virus Infection: Bleeding Disorders
EI Obeagu, F Amekpor, GY Scott - J Pub Health Nutri. 2023 - researchgate.net
…should be taken into consideration in pregnant women since bleeding disorders might
pose difficulties for pregnancy and childbirth in women. During a typical pregnancy, levels of…
Use of the Levonorgestrel Intrauterine System to Treat Heavy Menstrual Bleeding in Adolescents and Young Adults with Inherited Bleeding Disorders and Ehlers-Danlo Syndrome
PS Huguelet, JL Laurin, D Thornhill, G Moyer - Journal of Pediatric and Adolescent Gynecology - ScienceDirect.com
Report on the rate of amenorrhea among adolescents and young adults with a bleeding diathesis after insertion of the 52-mg levonorgestrel intrauterine system (LNG-IUS)…
Cited by 10 Related articles All 4 versions
LIMITATIONS: The full version of this article is unavailable without purchase and/or subscription to the publisher.
Patient‐reported Outcomes in Autosomal Inherited Bleeding Disorders: A Systematic Literature Review
ES van Hoorn, ME Houwing, W Al Arashi… - 2022 - Wiley Online Library
Currently, it is unknown which patient-reported outcomes are important for patients with autosomal inherited bleeding disorders. Therefore, the purpose of this study is to systematically review … measurement methods in autosomal inherited bleeding disorders.
Risk factors for Future Bleeding in Patients with Mild Bleeding Disorders: Longitudinal Data from the Vienna Bleeding Biobank
D Mehic, G Neubauer, F Janig, A Kaider, C Ay… - Journal of Thrombosis & Haemostasis, 2023 - Elsevier
…392 patients… were investigated for the recurrence of bleeding events. During the follow-up time… 72% of patients had at least 1 bleeding event.
LIMITATIONS: The full version of this article is unavailable without purchase and/or subscription to the publisher.
DQ Tran, CC Benson, JA Boice, M Chitlur, AL Dunn… - 2023 - Taylor & Francis
Working Group 1 defined 63 top priority research questions concerning arthropathy/pain/bone health, inhibitors, diagnostics, gene therapy…
Iron Deficiency and Fatigue Among Adolescents with Bleeding Disorders (BD)
A Zia, J Stanek, M Christian‐Rancy… - American Journal of hematology, 2022 - Wiley Online Library
…we enrolled adolescents with heavy menstrual bleeding without BD…. Two hundred and fifty consecutive adolescents were enrolled…43%… were diagnosed with BD.
Building the Foundation for… Inherited Bleeding Disorders: Research Priorities in Health Services; Diversity, Equity, and Inclusion
VR Byams, JR Baker, C Bailey, NT Connell… - Expert Review of hematology, 2023 - Taylor & Francis
…not ensured for all people with inherited bleeding disorders. Ultra-rare inherited BDs, bleeding that particularly impacts women and other people with the potential…
The Burden of Heavy Menstrual Bleeding
BA Konkle - Blood, The Journal of the American Society of hematology, 2022 - ashpublications.org
Two-thirds of women treated with anticoagulation for acute VTE (venous thromboembolism) met the criteria for AUB (abnormal uterine bleeding) with a considerable negative impact on their quality of life (QoL).
Building the Foundation for… Inherited Bleeding Disorders: Facilitating Research Through Infrastructure, Workforce, Resources and Funding
MV Ragni, G Young, G Batsuli, E Bisson… - Expert Review of Hematology, 2023 - Taylor & Francis
Research is critical to advancing the diagnosis and care of people with inherited bleeding disorders (PWIBD). This research requires significant infrastructure, including people and resources. Hemophilia treatment centers (HTC) need many different skilled care professionals including…
Does a Bleeding Disorder Lessen the Efficacy of the 52-mg Levonorgestrel-Releasing Intrauterine System for Heavy Menstrual Bleeding in Adolescents?
M Khalighi, AP Wheeler, OA Adeyemi-Fowode… - Journal of Adolescent Health, 2022 - Elsevier
The aim of this study is to compare the patient-reported bleeding outcomes and … menstrual bleeding (HMB) among adolescents with and without a diagnosed inherited bleeding disorder…
Cited by 2 Related articles All 7 versions
LIMITATIONS: The full version of this article is unavailable without purchase and/or subscription to the publisher.