Society guideline links: Rare inherited bleeding disorders

Introduction — 

This topic includes links to society and government-sponsored guidelines from selected countries and regions around the world. We will update these links periodically; newer versions of some guidelines may be available on each society's website. Some societies may require users to log in to access their guidelines.

The recommendations in the following guidelines may vary from those that appear in UpToDate topic reviews. Readers who are looking for UpToDate topic reviews should use the UpToDate search box to find the relevant content.

Links to related guidelines are provided separately:

●(See "Society guideline links: Immune thrombocytopenia (ITP) and other platelet disorders".)

●(See "Society guideline links: von Willebrand disease".)

●(See "Society guideline links: Hemophilia A and B".)

●(See "Society guideline links: Acquired bleeding disorders".)

●(See "Society guideline links: Transfusion and patient blood management".)

International

●International Society of Thrombosis and Haemostasis (ISTH): Recommendations and guidelines for management of pregnancy and delivery in congenital fibrinogen disorders (2024)

●ISTH: Standardisation of definition and management for bleeding disorder of unknown cause (2024)

●ISTH: Diagnosis and classification of factor XIII deficiencies (2011)

●AABB: Evidence-based practice guidelines for plasma transfusion (2010)

Canada

●National Advisory Committee on Blood and Blood Products (NAC): Statement on factor XIII concentrate use (2018)

●NAC: Framework for appropriate use and distribution of solvent detergent treated plasma in Canada (2015)

United States

●National Bleeding Disorders Foundation (NBDF): Medical and Scientific Advisory Council (MASAC) recommendations concerning products licensed for the treatment of hemophilia and selected disorders of the coagulation system (2024)

●NBDF: MASAC recommendations regarding diagnosis and management of inherited bleeding disorders in girls and women with personal and family history of bleeding (2024)

●NBDF: MASAC recommendations on administration of vaccines to individuals with bleeding disorders (2023)

●NBDF: MASAC recommendations regarding physical therapy management for the care of persons with bleeding disorders (2023)

●NBDF: MASAC guidelines for pregnancy and perinatal management of women with inherited bleeding disorders and carriers of hemophilia A or B (2021)

●NBDF: MASAC guidelines for emergency department management of individuals with hemophilia and other bleeding disorders (2019)

●NBDF: MASAC recommendations on treatment of hepatitis C in individuals with hemophilia and other bleeding disorders (2016)

●NBDF: MASAC recommendations regarding doses of clotting factor concentrate in the home (2016)

●NBDF: MASAC recommendation regarding home factor supply for emergency preparedness for patients with hemophilia and other bleeding disorders (2014)

●NBDF: MASAC recommendation regarding the use of recombinant clotting factor products with respect to pathogen transmission (2014)

●NBDF: MASAC recommendations regarding standards of service for pharmacy providers of clotting factor concentrates for home use to patients with bleeding disorders (2008)

●NBDF: MASAC recommendation regarding factor concentrate prescriptions and formulary development and restrictions (2005)

●NBDF: MASAC recommendations on use of COX-2 inhibitors in persons with bleeding disorders (2005)

●NBDF: Transition guidelines for people with bleeding disorders (2003)

United Kingdom

●United Kingdom Haemophilia Centres Doctors' Organisation (UKHCDO): Good practice paper on recommendations for the clinical interpretation of genetic variants and presentation of results to patients with inherited bleeding disorders (2019)

●British Society of Haematology (BSH): Guidelines on the spectrum of fresh frozen plasma and cryoprecipitate products – Their handling and use in various patient groups in the absence of major bleeding (2018)

●UKHCDO and Royal College of Obstetricians and Gynaecologists (RCOG): Green-top guideline on the management of inherited bleeding disorders in pregnancy (2017)

●UKHCDO: Guidance on the dental management of patients with haemophilia and congenital bleeding disorders (2013, reviewed 2016)

●UKHCDO: Emergency and out of hours care of patients with bleeding disorders – Standards of care for assessment and treatment (2009, reviewed 2013)

●UKHCDO: Guidance on vaccination against hepatitis A and B viruses in patients with inherited coagulation factor deficiencies and von Willebrand disease, update (2013)