Advantage Of Registry In Multicenter Study Of Patients With Congenital Rare Bleeding Disorder

Introduction: Factor VII deficiency (FVII) is a congenital rare bleeding disorder. It is characterized by a wide clinical and molecular heterogeneity. It has an autosomal recessive pattern of in heritance. There is little information about control and side effects of treatment of this disease. Until now any comprehensive assessments have not been done on its treatment methods and side effects in any coagulation treatment center because of its rarity. Methods: An online registry system entitled Seven Treatment Evaluation Registry (STER) has been made that studies this disease as an international multicenter prospective observational to provide information about effect and immunity of existent treatment. STER is a web-based registry that collect data of treatment and outcome in patients of factor VII deficiency. Obtained data will be used for producing knowledge and treatment of patients in future. Results: In our report only 5 patients with FVII deficiency were studied and registered. Their demographic and treatment information was gathered and, according to STER's protocol, was registered in www.targetseven.org. Protocol was accordance with Helsinki Declaration of 1975, as revised in 2008. All patients informed consent. In the other hand STER enrolled 225 patients from all center. Therefore this collection can provide information about treatment and side effect of disease. Discussion/Conclusion: Entering new patients data in to the multicenter study will add knowledge of rare bleeding disorders subsequent analysis will help prepare or update the guidelines for the treatment of disorders. In rare bleeding disorder multicenter cooperation can provide knowledge in future