Trends in prescribing practices for management of haemophilia: 1999-2021.

Introduction: People with haemophilia rely on specialists for their care, yet the specific dosing regimens of treatments prescribed by these specialists have not been widely studied.

Aim: The objective of this study is to describe trends in clinician prescribing practices for the management of haemophilia in the United States (US).

Methods: We administered surveys to members of the Hemostasis and Thrombosis Research Society via paper surveys at its in-person annual symposia in 1999 and 2015, and an online survey in 2021.

Novel approach to genetic analysis and results in 3000 hemophilia patients enrolled in the My Life, Our Future initiative.

Hemophilia A and B are rare, X-linked bleeding disorders. My Life, Our Future (MLOF) is a collaborative project established to genotype and study hemophilia. Patients were enrolled at US hemophilia treatment centers (HTCs).

Complications of haemophilia in babies (first two years of life): a report from the Centers for Disease Control and Prevention Universal Data Collection System.

Aim: To describe the prevalence and complications in babies ≤2 years with haemophilia.

Methods: We used a standardized collection tool to obtain consented data on eligible babies aged ≤2 years with haemophilia enrolled in the Centers for Disease Control and Prevention Universal Data Collection System surveillance project at US Hemophilia Treatment Centers (HTCs).

Results: Of 547 babies, 82% had haemophilia A, and 70% were diagnosed within one month of birth.

Burden of illness: direct and indirect costs among persons with hemophilia A in the United States.

Objective: To examine the direct and indirect costs of hemophilia care among persons with hemophilia A in the US.

Methods: Observational data were obtained from HUGS-Va, a multi-center study from six federally supported hemophilia treatment centers (HTCs). Eligible individuals completed a standardized initial questionnaire and were followed regularly for 2 years to obtain information on work or school absenteeism, time spent arranging hemophilia care, and unpaid hemophilia-related support from caregivers.

Physical activity and health outcomes in persons with haemophilia B.

Regular participation in physical activity helps to prevent damage and maintain joint health in persons with haemophilia. This study describes self-reported physical activity participation among a sample of people with haemophilia B in the US and measures its association with health-related quality of life (HRQoL). Data on 135 participants aged 5-64 years were abstracted from Hemophilia Utilization Group Study Part Vb.