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The field of gene therapy is a hot topic of discussion. With multiple clinical trials ongoing, people with hemophilia are at the forefront of gene therapy research.

Has anyone ever asked you about your thoughts and opinions about gene therapy? Here’s your chance to make them known! Hemophilia Federation of America Research is asking people with hemophilia, or caregivers of a child(ren) with hemophilia, to take the “Gene Therapy & You!” Survey.

This survey will take about 10 minutes and will ask you:

  • What you know about the field of gene therapy
  • How you like to learn about potential new treatments currently under research, like gene therapy
  • Where and from whom do you like to learn about new topics related to hemophilia, including the field of gene therapy

Based on community ideas for research topics, we are undertaking this project with funding and collaboration from Spark Therapeutics based on our mutual desire to support community education about the field of gene therapy.

A goal of this project is to further develop educational resources that are relevant to our community on the topic of gene therapy research with complete transparency. No personal information or identifiers will be collected by this survey.*

Please take a few minutes to help HFA and Spark Therapeutics learn and understand what you know about the field of gene therapy research and how we can best educate and inform the community about gene therapy research and all that it entails.

Sincerely,
HFA Research Team
Elaine Chan
Janet Chupka

*This research project is supported by funding from Spark Therapeutics, a company focused on investigational gene therapy research in hemophilia. A general summary of survey results without names, contact information, or any other personal details about survey participants will be shared with Spark Therapeutics at the end of the project. Spark Therapeutics will use the general summary to inform the development of informational resources in the field of gene therapy. HFA will use the results of the project to inform our development of educational resources on gene therapy research for the hemophilia community. Participation in this research project is voluntary.

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