This continuing education course for healthcare professionals is divided into four modules, and covers the diagnosis of hemophilia, appropriate treatment options for bleeding episodes, and management of complications and their associated psychosocial issues.
This paper provides guidance on the care of girls and adolescents with bleeding disorders who have heavy menstrual bleeding. It discusses screening tools; laboratory evaluation; imaging recommendations; medical, hormonal, and nonhormonal management; use of NSAIDs; transfusion; intrauterine procedures and devices; management of ovarian cysts; and support of reproductive health.
This document provides guidance on hemoglobinopathy laboratory testing and follow-up technique, in support of early detection of hemoglobin disorders. It includes an overview of laboratory structure and discusses algorithms for testing, reporting, and follow-up from several programs in the US.
This resource contains comprehensive patient-education information and links to NIH-sponsored clinical trials. There is also a section for healthcare professionals, with research updates and tips (on hydroxyurea, pain management, healthy living) to share with patients.
While the management of COVID-19 continues to evolve, these recommendations from the European Society for Blood and Marrow Transplantation provide useful guidance on stem cell transplant (HCT) in the context of COVID-19.
Marrowforums was founded by volunteers for, and board members of, the nonprofit Aplastic Anemia & Myelodysplastic Syndromes International Foundation, as a forum for patients with BMF diseases such as AA, MDS, and PNH and their extended support system (family members, friends and caregivers, healthcare professionals). In addition to hosting discussion groups, the website provides links to medical information, clinical trials, and patient advocacy resources.
The authors of this study state that iWISh “focused on perceptions of 1,507 patients and 472 physicians from 13 countries regarding the diagnostic pathway, frequency and severity of signs and symptoms, and treatment use” related to ITP.
This January 2021 consensus statement was written by clinicians with an interest in coagulation disorders or ITP and was reviewed by members of the UK ITP forum. The ITP Support Association is a UK charity.
This resource for patients and healthcare providers provides a wealth of information, encompassing diagnosis and treatment, along with printable fact sheets and brochures; connections to treatment centers and clinical trials; descriptions of current research projects and access to published scientific research; professional webinars and guidelines for diagnosis, treatment, and management; and, especially for women with VWD, tips for pregnancy and childbirth.
The World Federation of Hemophilia (WFH) guidelines were last updated in 2012, as the 2nd edition of the guidelines. Learn more about important advances in several aspects of hemophilia management since then in the current 3rd edition of the WFH guidelines, published in August 2020.
These science-based guidelines for best-practice care were developed by a multicenter panel of healthcare professionals selected by NHLBI’s leadership. The guidelines highlight commonly encountered issues in SCD, such as routine health maintenance, detection and treatment of SCD acute and chronic complications and comorbidities, and indications for and monitoring of hydroxyurea and blood transfusion therapy.
Multimedia resources for patients, offering fact sheets, educational materials, webinars, and personal stories about thalassemia. For healthcare professionals, current virtual grand rounds and webinars on various aspects of thalassemia management.
The goal of 30-year-old Be the Match is to connect patients with donor matches for life-saving adult bone marrow or umbilical cord blood transplants. Be the Match is operated by the National Marrow Donor Program® (NMDP), a nonprofit organization that matches patients with donors, educates healthcare professionals, and conducts research through its Center for International Blood and Marrow Transplant Research®. In an April 2021 news release, the organization noted that since its inception, it has facilitated more than 105,000 transplants for patients with leukemia, lymphoma, sickle cell disease, and approximately 70 other diseases.
The NIDDK website offers user-friendly sections including Definition & Facts; Symptoms & Causes; Diagnosis; Treatment; Eating, Diet, & Nutrition; and Clinical Trials. Information about related conditions and diseases, as well as related research into hematologic diseases at NIDDK, is also provided.
The Platelet Disorder Support Association (PDSA) was patient-founded in 1998 for patients with immune thrombocytopenia (ITP) and other platelet disorders. Resources of interest to healthcare providers include a newsroom; the updated international consensus report on management of primary ITP (Provan et al, Nov. 2019); and more than a dozen patient education pamphlets covering a wide range of topics—including the role and function of platelets in ITP, the female lifecycle and ITP, FAQs and lifestyle tips related to ITP, and information about health insurance assistance programs for patients with ITP. The PDSA website also provides up-to-date information about the ITP Natural History Study Patient Registry; the COVID-19 and ITP Research Survey; and relevant medical meetings, including the “ITP Conference 2021,” a virtual event that will occur on July 31 and August 1, 2021.
The Castleman Disease Collaborative Network is a patient advocacy organization founded in 2012 to advance research and treatment. Patients can read patient education materials; donate tissue samples; and enter their medical data into the ACCLERATE patient registry, to inform clinical research (after data de-identification). Resources for clinicians include access to recent studies, treatment toolkits and guidelines, and information about CDCN-funded research. In AIM 2021 (“All-in Movement” 2021), the CDCN Scientific Advisory Board will crowdsource and prioritize questions and ideas from Castleman’s disease community to guide future clinical trials.
This brief but intriguing roundup in The Hematologist, a publication of the American Society of Hematology, highlights cutting-edge clinical trials of the past year focused on gene therapy for sickle cell disease.
The European School of Haematology, or ESH, held its first translational research e-conference on bone marrow failure disorders live online from November 13–15, 2020. Peruse the website for free access to e-posters, as well as detailed study summaries in the 142-page online scientific program book.
These evidence-based guidelines on management of ITP were developed by a multidisciplinary panel formed by ASH in 2015 to evaluate 2011 ITP guidelines and formulate recommendations based on available evidence and recommendations through May 2017. ASH will maintain currency of the guidelines by ongoing review and surveillance.
The NHLBI website provides comprehensive educational information for patients with bleeding disorders including hemophilia, von Willebrand disease, coagulation disorders, blood clotting disorders, and clotting factor deficiencies.
Updated for 2021, this GeneReviews® e-book provides comprehensive, up-to-date information about sickle cell disease (SKD) diagnosis, supportive care, and treatment options, as well as SKD-related genetic testing and counseling.
Because inherited bone marrow failure (IBMF) syndromes are associated with a high risk of cancer, researchers and clinicians at the National Cancer Institute have studied patients with IBMF for several decades, and have recently uncovered several new genetic causes of IBMF. The NCI Inherited Bone Marrow Failure Syndrome Cohort Study enrolls families with one or more members with an IBMF syndrome, and includes first-degree and other relatives as appropriate.
This review article summarizes current knowledge about this complex disease, highlights research into targeted treatment, and discusses how characteristics of AIHA may vary in older adults, depending on their immunological status.
The National Hemophilia Foundation website provides background information on hemophilia, von Willebrand disease and other factor deficiencies, and rare platelet disorders, as well as disease-specific best-practices treatment recommendations and management guidelines for healthcare professionals.
Comprehensive multimedia information for clinicians, including current research, management guidelines and toolkits, and patient education resources.
The authors of this StatPearls e-book focus on inherited bone marrow failure (BMF) disorders, with sections including but not limited to etiology and pathophysiology, evaluation and management, differential diagnoses, patient education, and clinical pearls related to several common BMF syndromes.
This review article explores putative mechanisms by which infection and inflammation can trigger and drive hemolysis in cold agglutinin disease, or CAD, and secondary cold agglutinin syndrome, or CAS, as well as recent advances in understanding the pathogenesis of these disorders. Novel targeted treatments such as complement-directed therapies are discussed.
The CDC funds a national network of hemophilia treatment centers, or HTCs. This searchable directory enables users to find HTCs and regional HTC coordinators. Mailing labels can be printed and Treatment Center Staff can be emailed directly from the site.
Learn more about European clinicians’ perspective on management of sickle cell disease and thalassemia during the COVID-19 pandemic, with recommendations from the European Hematology Association.
The website of this highly rated charitable organization provides education (patient guides, fact sheets, research summaries) and advocacy resources related to benign hematologic malignancies including aplastic anemia, paroxysmal nocturnal hemoglobinuria, and related bone marrow failure disorders.
In this multicenter review and consensus opinion, clinicians from the US and UK shed new light on the possible etiology of immune-mediated cytopenias, and offer management strategies for patients with inherited metabolic disorders who develop single or multilineage cytopenias following hematopoietic stem cell transplantation.
This case-based article, included in the 2019 American Society of Hematology (ASH) educational program, teaches clinicians when to suspect an acquired coagulopathy in the acute-care setting, describes current specialized treatments, and highlights other acquired conditions with similar presentations.