[tabi] RP survey for women, must take soon!

  • From: "Allison and Chip Orange" <acorange@xxxxxxxxxxx>
  • To: <tabi@xxxxxxxxxxxxx>
  • Date: Sat, 12 Jun 2010 14:16:07 -0400

From:
Lions Vision Center JHU
To:
Lions Vision Center JHU
Sent: Friday, June 04, 2010 11:08 PM
Subject: Web-based Retinitis Pigmentosa survey
Hello!
We are a research team at the Johns Hopkins University, Wilmer Eye Institute
interested
in vision changes that have been reported by women with retinitis pigmentosa
(RP).
In particular, some women have told us that pregnancy and breastfeeding have
had
an effect on their vision, while others have not noticed such effects.  In
order
to find out how common such effects are, and whether they correspond to
other changes
that occur in all pregnant women, or in all RP patients, we have created an
anonymous
survey on the Web to collect information about RP during pregnancy and
breastfeeding.
If you are not a woman who had a pregnancy, please feel free to forward this
email
to others you may know with RP who have been pregnant.
If you are interested in participating in this research study, you can
access it
through the following link:
http://162.129.125.253/rpsurvey/rpsurvey.htm
The survey will be available between  May 15, 2010 and June 15, 2010.  The
survey
should take between 10 and 20 minutes to complete, depending on the number
of pregnancies
you have had.  Your completing this survey will serve as your consent to be
in this
research study.  We can only use your responses if you fully complete all
parts of
the survey.
If you have any questions you can reach us by e-mail at
RPpregnancy@xxxxxxxxxxxxxxxxx
   You can also send us an e-mail if you would like to be informed of the
outcome
(shortly after June 2010) and if you would be willing to participate in a
possible
follow-up study.  Sending us an e-mail will not affect the anonymity of the
survey,
since we have no way of linking your survey responses on the website with
your e-mail
address.
Thanks in advance for your help!
Principal Investigator: Gislin Dagnelie, Ph.D.
Study team:  Ava Bittner, O.D.;  Pam Jeter,  Ph.D., Maryam Khan, M.D., &
Liancheng
Yang
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  • » [tabi] RP survey for women, must take soon! - Allison and Chip Orange