National haemophilia programme development in the Republic of Georgia

Abstract

After the dissolution of Soviet Union in 1991, haemophilia care in the Republic of Georgia was negatively affected because of the expense of treatment products, lack of clinical and diagnostic facilities, and the need for trained personnel throughout the country. In 2001, the Georgian Government, working through the Ministry of Health, in collaboration with Georgian Association of Haemophilia and Donors, the Institute of Haematology and Transfusion, and the World Federation of Haemophilia, initiated a National Haemophilia Programme. As part of this programme the first Georgian Haemophilia Treatment Centre (HTC) was established. In this paper, we will describe (i) our outreach efforts to identify patients with haemophilia (PWH), (ii) the diagnostic and clinical services provided to patients by the HTC, and (iii) the results of a patient survey designed to assess patient satisfaction with the care provided. Total of 216 PWH were diagnosed, mean age was 25 years (range 4 months to 75 years); 43% had severe, 33% had moderate and 24% had mild haemophilia A or B. Overall, 183 (85%) had haemophilia A and 33 (15%) had haemophilia B, giving a ratio of 5.6. During the 2-year period, 77% of the expected number of PWH was identified by our outreach programme. Vast majority had comprehensive evaluation including joint assessment and over 60% were tested for blood-borne infections within a year and half period. Our findings showed that haemophilia care was considerably improved since the beginning of the National Haemophilia Programme and the survey of PWH showed a high degree of satisfaction with services provided in the HTC. In conclusion, close collaboration of the government, non-government entities and medical professionals in a Georgian national haemophilia care model; resulted in the successful delivery of the much needed services and care to the people living in Georgia with haemophilia.

Prevalence and geographic distribution of haemophilia in Costa Rica

“…In the population of Hispanic men in the United States, the prevalence is also higher than between Costa Ricans: 11.5 cases per 100 000 men (18). The median age of the haemophiliac population in Costa Rica (23.7 years of age) is similar to that of US-American (25 years) (18) and Georgian patients (25 years) (7,19).…”

Características clínicas y epidemiológicas de pacientes con hemofilia del eje cafetero, Colombia.

“…De acuerdo a la comisión europea experta en enfermedades raras, es necesario realizar un registro sistemático y uniforme de las características clínicas y otras para poder realizar estudios observacionales donde se evalúen desenlaces específicos que permitan realizar guías de manejo adecuadas para cada población 7,15,16 . Estados Unidos y Europa son líderes en la iniciativa de unificar los registros de pacientes [17][18][19] , algunos países como Italia han desarrollado múltiples sistemas de información, tales como el Registro Nacional Italiano para las Enfermedades Raras (RNMR), el Registro…”

A study of reported factor IX use around the world

“…We believe this is the first study to analyse global usage of FIX concentrates. In the 1950s, there was little difference in haemophilia care worldwide [11–13] and inadequate treatment resulted in pain, joint deformities, arthropathy, disabilities and death in childhood or early adult life for those with severe haemophilia not receiving treatment [3,14–19]. Approximately 70–80% of people with haemophilia A and B globally, primarily in the developing world, receive inadequate or no treatment [7,20] because of unavailable and/or unaffordable factor concentrates [6,7,9,15,18,21–28].…”