A research study is asking people with hemophilia and other inherited bleeding disorders living in the U.K., U.S., or Germany to take part in a survey evaluating how the COVID-19 pandemic is affecting the mental health of those with these diseases.
The four-part survey, which can be accessed here, will ask respondents from these three countries to provide personal information about their condition (but not information that can identify a person), describe how they feel and how they have been dealing with difficult situations, and how the pandemic has affected their life.
“With the results of this survey we hope to develop community resources to help individuals with inherited bleeding disorders cope with the COVID-19 pandemic,” the researchers state in the survey’s welcoming page.
In addition to assessing the impact and psychological challenges the pandemic poses to this patient community, the survey also aims to assess similarities and differences in the personal experiences of people from the three countries.
It also seeks to identify current areas where the needs of patients are not being adequately met, and to provide suggestions for potential interventions.
The survey is open to people with inherited bleeding disorders, as well as to parents and caregivers of children with these diseases. It is expected to take 15–20 minutes to complete, and respondents and their answers will be kept fully anonymous; only aggregated data will be reported and published, its introduction states.
Survey participation is voluntary, and the only noted potential risk for taking part is that answering questions about COVID-19 may be anxiety-provoking for some people.
The survey was created in collaboration with patient advocacy groups from the U.K. (The Haemophilia Society), the U.S. (National Hemophilia Foundation and Hemophilia Federation of America), and Germany (Deutsche Hämophiliegesellschaft and Interessengemeinschaft Hämophiler).
Additional information, including study contacts, and specific instructions to answer survey questions, can be found using the survey link.
Inherited bleeding disorders are diseases where mutations in certain genes cause specific clotting proteins to either malfunction or cease to be produced, leading to abnormal bleeding. There are different types and sub-types of inherited bleeding disorders, depending on the specific clotting proteins that are defective. These include not only all types of hemophilia, but also Von Willebrand disease.
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