A analysis examine is asking folks with hemophilia and different inherited bleeding issues residing within the U.Okay., U.S., or Germany to participate in a survey evaluating how the COVID-19 pandemic is affecting the psychological well being of these with these illnesses.
The four-part survey, which could be accessed here, will ask respondents from these three international locations to offer private details about their situation (however not data that may establish an individual), describe how they really feel and the way they’ve been coping with tough conditions, and the way the pandemic has affected their life.
“With the outcomes of this survey we hope to develop group assets to assist people with inherited bleeding issues address the COVID-19 pandemic,” the researchers state within the survey’s welcoming web page.
Along with assessing the impression and psychological challenges the pandemic poses to this affected person group, the survey additionally goals to evaluate similarities and variations within the private experiences of individuals from the three international locations.
It additionally seeks to establish present areas the place the wants of sufferers are usually not being adequately met, and to offer solutions for potential interventions.
The survey is open to folks with inherited bleeding issues, in addition to to folks and caregivers of kids with these illnesses. It’s anticipated to take 15–20 minutes to finish, and respondents and their solutions can be saved totally nameless; solely aggregated knowledge can be reported and revealed, its introduction states.
Survey participation is voluntary, and the one famous potential threat for participating is that answering questions on COVID-19 could also be anxiety-provoking for some folks.
The survey was created in collaboration with affected person advocacy teams from the U.Okay. (The Haemophilia Society), the U.S. (National Hemophilia Foundation and Hemophilia Federation of America), and Germany (Deutsche Hämophiliegesellschaft and Interessengemeinschaft Hämophiler).
Further data, together with examine contacts, and particular directions to reply survey questions, could be discovered utilizing the survey hyperlink.
Inherited bleeding issues are illnesses the place mutations in sure genes trigger particular clotting proteins to both malfunction or stop to be produced, resulting in irregular bleeding. There are differing kinds and sub-types of inherited bleeding issues, relying on the precise clotting proteins which are faulty. These embrace not solely all types of hemophilia, but in addition Von Willebrand disease.