Survey Seeks to Better Understand How AAV Patients Make Treatment Decisions

Survey Seeks to Better Understand How AAV Patients Make Treatment Decisions
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A survey is seeking people with ANCA-associated vasculitis (AAV) around the world to help researchers better understand how patients make decisions about treatment.

Called OPTIONS Vasculitis, the survey is collecting responses from people with AAV, including granulomatosis with polyangiitis and microscopic polyangiitis, as well as other kidney diseases. The survey, as well as additional information, can be found here.

OPTIONS Vasculitis — short for Options and Preferences for Treatments Informing recOmmendatioNs Study in Vasculitis — is being organized by researchers and patients from Canada, Switzerland, the United Kingdom, and the United States.

In the first part of the survey, participants will be asked a few questions about themselves and their past medical treatment.

Then, respondents will be asked to imagine that they have just been diagnosed with AAV, and that their doctor is explaining the potential harms and benefits of a treatment called plasma exchange.

AAV is characterized by inflammation in the blood vessels, which is usually driven by antibodies called ANCAs. Plasma exchange involves removing and replacing a person’s plasma — the liquid part of blood that contains water, salts, and proteins — and is believed to help remove the disease-driving ANCAs. However, the usefulness of plasma exchange as a possible treatment for AAV is not entirely clear.

For the purposes of the survey, respondents will be asked whether or not they would elect to undergo plasma exchange in five imaginary scenarios. The basic scenario is the same — that the survey taker has just been diagnosed with AAV and is deciding whether or not to undergo the treatment. However, the explained benefits and harms of the treatment will be slightly different in each scenario.

Researchers will then analyze the answers given, to better understand how patients make decisions about treatment.

The survey is anonymous, and only the study researchers will have access to the data on SurveyMonkey. The anonymous data collected will be kept confidential and private. Consent to participate is implied by completing the survey.

Additional information about the survey can be attained by contacting the survey team directly, via email at [email protected] or via phone at 204-632-3664.

Marisa holds an MS in Cellular and Molecular Pathology from the University of Pittsburgh, where she studied novel genetic drivers of ovarian cancer. She specializes in cancer biology, immunology, and genetics. Marisa began working with BioNews in 2018, and has written about science and health for SelfHacked and the Genetics Society of America. She also writes/composes musicals and coaches the University of Pittsburgh fencing club.
Total Posts: 16
Inês holds a PhD in Biomedical Sciences from the University of Lisbon, Portugal, where she specialized in blood vessel biology, blood stem cells, and cancer. Before that, she studied Cell and Molecular Biology at Universidade Nova de Lisboa and worked as a research fellow at Faculdade de Ciências e Tecnologias and Instituto Gulbenkian de Ciência. Inês currently works as a Managing Science Editor, striving to deliver the latest scientific advances to patient communities in a clear and accurate manner.
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Marisa holds an MS in Cellular and Molecular Pathology from the University of Pittsburgh, where she studied novel genetic drivers of ovarian cancer. She specializes in cancer biology, immunology, and genetics. Marisa began working with BioNews in 2018, and has written about science and health for SelfHacked and the Genetics Society of America. She also writes/composes musicals and coaches the University of Pittsburgh fencing club.
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