ANNUAL GLOBAL SURVEY 2011 - World Federation of Hemophilia

World Federation of Hemophilia Global Survey 2011Sample Survey QuestionnaireA. National Hemophilia OrganizationOrganization nameAddressCityState, Province, Region,Prefecture, CountyPostal/ZIP CodeCountryPhoneFaxE-mailWebsiteB. Identified patients(Please DO NOT estimate or guess) Number Not known1. Number of identified people with hemophilia A and B (PWH)2. Number of identified people with von Willebrand disease (vWD)3. Number of identified people with other hereditary bleedingdisorders (including rare factor deficiencies and inherited plateletdisorders)The WFH would like to know how you collect the data you are providing for this survey.If you have a registry, we would like to know more about the registry. A registry is aregularly updated centralized list of identified people with hemophilia (PWH) or inheritedbleeding disorders. A registry includes information on personal details, diagnosis, treatment,and complications.4. What is the source of the numbersprovided for this survey?Is your database updated throughout the yearor only once per year?Who updates the database?Check oneA registry of all PWH and other inheritedbleeding disorders in your country.A registry of all PWH and other inheritedbleeding disorders in your country’s hemophiliatreatment centres.Count information provided by all of yourcountry's hemophilia treatment centresCount information provided by some of yourcountry’s hemophilia treatment centres.Other (Describe):Ongoing update (can be updated anytime)Yearly update (the registry is updated once eachyear)Other (please describe):Doctors update the databasePatient organization updates the databaseHospitals or clinics update the databaseOther (please describe):WFH Global Survey 2011 32