The Centro American Hemophilia Registry, of the CARS Hemophilia Group - Update September 2006

摘要

Hemophilia A (HA) and B (HB) are X-linked recessive bleeding disorder caused by absence or deficiency of coagulation factor VIII or IX, respectively. The possibilities of diagnosis and treatment of hemophilia vary in different countries. Concerning these two points World Federation of Hemophilia (WFH) divides countries in two groups: develop and developing countries. Central America (CA) countries: Guatemala, Salvador, Honduras, Nicaragua, Costa Rica and Panama, belongs to the second group. The CA-region are considered as developing countries with approximately 1000 hemophilia patients treating in different National Health Care Centers or institutions as Blood Bank. Hemophilia care and genetic counseling are still rendered difficult owing to limited availability of clotting factor concentrate and molecular genetic diagnosis. The Central America Research Study group Hemophilia (C.A.R.S-Hemophilia group) was founded in September 2005. This group would be a network between Centro American partners of the main healthy institution where the hemophiliac patients are treat and the national groups of patients (national association) of CA countries. The C.A.R.S-Hemophilia group will be present and give the preliminary results of epidemiological data on CA Hemophilia patients collected in this period with the collaboration of our centers. Descriptive epidemiology can provide useful information concerning the quality of medical assistance in our region.