[NFB-NM] Research announcement: looking for participants withretinitis pigmentosa or Leber congenital amaurosis

Tonia Trapp tltrapp.7.467 at gmail.com
Fri Nov 10 02:10:00 UTC 2017



From: NFBNet-Members-List [mailto:nfbnet-members-list-bounces at nfbnet.org] On
Behalf Of Blake, Lou Ann via NFBNet-Members-List
Sent: Wednesday, November 08, 2017 7:36 PM
To: nfbnet-members-list at nfbnet.org
Subject: [Nfbnet-members-list] Research announcement for members list


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.
Research Study: Attitudes of People who are Blind/Low Vision toward Gene
Editing Technology
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.  
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. 
3.     Participation will consist of a short questionnaire that includes
some information about yourself, followed by a 45 to 60 minute phone
interview asking about your life experiences and, after hearing some basic
information about gene editing, your thoughts and attitudes towards it.
4.     You do not need to know anything about gene editing to participate.  
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.  
6.     To be eligible to participate you must be over 18, speak English, and
have a diagnosis of either Leber congenital amaurosis or retinitis
The study is being conducted by Lily Hoffman-Andrews, a Masters student in
genetic counseling at Stanford University.  
If you are interested in participating, please fill out this brief online
survey: https://redcap.stanford.edu/surveys/?s=7YDEAJX48Y
If you have any questions or would like to learn more, you can contact Lily
at lilybha at stanford.edu. For participant's rights questions, contact
Lou Ann Blake, J.D.
Deputy Executive Director, Jernigan Institute
200 East Wells Street, Baltimore, MD 21230
(410) 659-9314, extension 2221| lblake at nfb.org 
 <https://nfb.org/> National Federation of the Blind
<http://www.facebook.com/nationalfederationoftheblind> Facebook
<https://twitter.com/NFB_Voice> Twitter
<https://www.youtube.com/NationsBlind> Youtube
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. 

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