Sarah Hendry - Academia.edu (original) (raw)

Papers by Sarah Hendry

Pain Medicine

Conflicts of interest: AHV has no conflicts of interest to disclose. SH was an employee of Verilo... more Conflicts of interest: AHV has no conflicts of interest to disclose. SH was an employee of Verilogue at the time this work was performed. EB is an employee of Verilogue. YH and CD are employees of AstraZeneca.

Orphanet Journal of Rare Diseases

Background For communities of people living with hemophilia and other genetic conditions, gene th... more Background For communities of people living with hemophilia and other genetic conditions, gene therapy could represent a paradigm shift in treatment strategies. As investigational therapeutic modalities such as gene therapy become more widely used and discussed, there is a critical need for all stakeholders to communicate using a lexicon that is intelligible, accurate, consistent, and representative of novel treatments. In doing so, expectations can be more carefully managed and potential risks, benefits, and limitations better understood. In recognition of this need, a first-ever study of gene therapy lexicon was conducted using established methods of market research and linguistic analysis. Methods Ninety-four participants representing hematologists, nurses, caregivers, and people with hemophilia A, in six countries (US, UK, Spain, Germany, France, Italy) took part in a series of in-depth interviews, face-to-face focus groups, an advisory board meeting, and online group interviews...

Pain Medicine

Conflicts of interest: AHV has no conflicts of interest to disclose. SH was an employee of Verilo... more Conflicts of interest: AHV has no conflicts of interest to disclose. SH was an employee of Verilogue at the time this work was performed. EB is an employee of Verilogue. YH and CD are employees of AstraZeneca.

Orphanet Journal of Rare Diseases

Background For communities of people living with hemophilia and other genetic conditions, gene th... more Background For communities of people living with hemophilia and other genetic conditions, gene therapy could represent a paradigm shift in treatment strategies. As investigational therapeutic modalities such as gene therapy become more widely used and discussed, there is a critical need for all stakeholders to communicate using a lexicon that is intelligible, accurate, consistent, and representative of novel treatments. In doing so, expectations can be more carefully managed and potential risks, benefits, and limitations better understood. In recognition of this need, a first-ever study of gene therapy lexicon was conducted using established methods of market research and linguistic analysis. Methods Ninety-four participants representing hematologists, nurses, caregivers, and people with hemophilia A, in six countries (US, UK, Spain, Germany, France, Italy) took part in a series of in-depth interviews, face-to-face focus groups, an advisory board meeting, and online group interviews...