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The below research participant solicitation is being provided for
informational purposes only. The National Federation of the Blind has no
involvement in this research, but we believe that it may contribute to
our research mission.<br>
<br>
<b>Research Study: Attitudes of People who are Blind/Low Vision toward
Gene Editing Technology<br>
</b> <br>
1. A research study is being conducted to learn
about the thoughts, feelings, and attitudes of people with specific types
of visual impairment (retinitis pigmentosa and Leber congenital
amaurosis) toward a new type of technology that is being developed,
called gene editing. <br>
2. The goal of the study is to help policymakers
and the scientific community better understand the views of people who
could be affected by development of this technology. <br>
3. Participation will consist of a short
questionnaire that includes some information about yourself, followed by
a <b>45 to 60 minute phone interview</b> asking about your life
experiences and, after hearing some basic information about gene editing,
your thoughts and attitudes towards it.<br>
4. You do <b>not</b> need to know anything about
gene editing to participate. <br>
5. There is a brief questionnaire to determine
eligibility. If you are selected to participate in an interview and
complete it you will receive compensation for your time. <br>
6. To be eligible to participate you must be over
18, speak English, and have a diagnosis of either Leber congenital
amaurosis or retinitis pigmentosa.<br>
<br>
The study is being conducted by Lily Hoffman-Andrews, a Masters student
in genetic counseling at Stanford University. <br>
<br>
If you are interested in participating, please fill out this brief online
survey:
<a href="https://redcap.stanford.edu/surveys/?s=7YDEAJX48Y">
https://redcap.stanford.edu/surveys/?s=7YDEAJX48Y</a><br>
<br>
If you have any questions or would like to learn more, you can contact
Lily at <a href="mailto:lilybha@stanford.edu">lilybha@stanford.edu</a>.
For participant's rights questions, contact 1-866-680-2906.<br>
<br>
<br>
Lou Ann Blake, J.D.<br>
Deputy Executive Director, Jernigan Institute<br>
200 East Wells Street, Baltimore, MD 21230<br>
(410) 659-9314, extension 2221|
<a href="mailto:lblake@nfb.org">lblake@nfb.org</a> <br>
<br>
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The National Federation of the Blind is a community of members and
friends who believe in the hopes and dreams of the nation’s blind. Every
day we work together to help blind people live the lives they want. <br>
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