Project Description

Author: Hasan et al.

Summary:

Hemophilia is a rare X-linked bleeding disease characterized by mutations in the genes for clotting factor VIII (Hemophilia A) or factor IX (Hemophilia B). Globally, it is a common hereditary condition with a male predominance and disease severity that ranges from mild to moderate to severe. Patients with hemophilia may have a high disease burden as a result of spontaneous bleeding into joints or muscles, which can cause discomfort, edema, arthropathy, and even life-threatening occurrences like cerebral hemorrhage. Although there are various therapeutic strategies, the lack of clinical, and biological profiles of the patients, are the key obstacles to efficient hemophilia management. Therefore, this study is undertaken to assess the clinical and biological characteristics and therapeutic management of the confirmed hemophilia cases registered in Hemophilia Treatment Center (HTC) at Rajshahi medical college hospital, Rajshahi, Bangladesh. This single-centered descriptive cross-sectional study will be conducted in the Hemophilia treatment center (HTC) of Rashahi medical college hospital (RMCH), Bangladesh for 12 months duration. Prior starting the study, a formal ethical clearance will be obtained. A total of 173 WBDR registered hemophilia patients will be approached for the interview, irrespective of disease severity and treatment status. All patients will be contacted over the phone to participate in the study at the study place. Contact details will be collected from the database of Rajshahi HTC. Written or verbal informed consent will be taken from each participant or their guardians, as direct or telephonic interviews will be performed to get maximum responses. A preformed questionnaire will be used to record all the data. The questionnaire will have 4 parts: i) A detailed history regarding socio-demographic status, ii) clinical and biological characteristics, disease severity, duration of disease diagnosis, iii) therapeutic treatment, and iv) health-seeking pattern. Laboratory details will also be collected from the database or the patient’s reports. All collected data will be systematically illustrated, reviewed and presented through descriptive statistics and finally will be analyzed by the statistical program Statistical Package for Social Science (SPSS) version 26.0. Relevant statistical test will be used during analysis. In all cases significance level will set p <0.05.

Status: Ongoing

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