Project Summary

Background: Haemophilia is an inherited bleeding disorder caused by deficiencies of clotting factor VIII (Haemophilia A) or IX (Haemophilia B), leading to prolonged and potentially life-threatening bleeding. Globally, a large proportion of people with haemophilia remain undiagnosed, with the burden disproportionately affecting low- and middle-income countries. In Uganda, fewer than 10% of the estimated haemophilia cases have been identified, reflecting major gaps in awareness, diagnosis, access to care, and policy guidance.

Objective: This study aims to assess the current status of haemophilia care and management across health facilities in Uganda to identify gaps in service availability, health system readiness, and healthcare worker capacity, and to generate evidence to inform national policy and guideline development.

Methods: We will conduct an online, cross-sectional descriptive study among healthcare workers in active clinical practice across public and private health facilities in Uganda. Eligible participants will be drawn from four professional regulatory bodies. Data will be collected using a structured online questionnaire capturing facility-level availability of diagnostic tools, medicines, and supplies, as well as healthcare workers’ knowledge, attitudes, and practices related to haemophilia care. Descriptive statistical analyses will be performed using STATA version 17.

Expected Outcomes: The study will provide a national snapshot of haemophilia care infrastructure, healthcare worker preparedness, and service availability. Findings will highlight critical gaps in diagnosis, treatment access, training, and coordination of care.

Conclusion: This situation analysis will generate essential evidence to support the development of national haemophilia policies, standardized clinical guidelines, and targeted capacity-building interventions to improve equitable access to quality haemophilia care in Uganda.

Lead Principal Investigator: Dr Phillip Kasirye Gitta; MBChB, MMED, Cert Hematology, Department of Paediatrics and Child Health, Mulago National Referral Hospital

Implementing Investigators: Dr Atwine Daniel

Study Coordinator: Dr Atwine Sunday Nighty

Collaborations: Collaborative Research with SRF Research and Training Centres, Mbarara, Uganda as the lead implementer.

Funding Source: Haemophilia Foundation Uganda, Kampala, Uganda

 Duration: 6 months

Start date: September 2025

Expected End date: February 2026