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• photopsias study
• Posted: 2007-12-13 13:05:21 By Marisa P
• Dear RPlisters,
  
  One of my colleagues, Dr. Ava Kiser, and I are trying to find out more about the occurrence of photopsias (flashes of light or “light shows”) among individuals with retinitis pigmentosa. We created a questionnaire that asks about your description of photopsias, possible associations and the impact. I know this topic has been discussed previously on this list, but there is surprisingly little systematic information that has been published in the literature on photopsias in RP. We are now hoping that many of you will be able to complete the questionnaire so we can learn more about this phenomenon and disseminate the information to others in the eye care and research communities.
  We created a web-based questionnaire for the purpose of collecting this information, and would very much appreciate it if many of you filled out this questionnaire, even if your experience with photopsias is very limited or if you have not experienced them. The questionnaire is anonymous, and will not ask for identifiable information other than a few general questions about your age group, gender, and race. The proposal to administer this questionnaire through a website has been reviewed by the Institutional Review Board for Human Subjects Research of the Johns Hopkins University School of Medicine, and they have given us permission to conduct this research without obtaining written informed consent from the respondents, since that would in fact void the anonymity of the questionnaire.
  We expect that it will take you 20-30 minutes to complete the questionnaire, depending on your reading speed or if you are using a magnifier, screen reader or other software.
  
  Please visit the questionnaire at:
  http://162.129.125.253/lvc/photopsias/index.htm
  
  We certainly welcome comments, and you may e-mail us separately so your questionnaire responses will not be identified by comments that may reveal your identity. Ava Kiser may be contacted at: abittne1@jhmi.edu
  Finally, we know that many of you have friends and relatives who are RP patients, but who may not subscribe to this list, and we would appreciate it if you could forward this e-mail to them. Thanks in advance for your help!
  
  Very best regards,
  
  Gislin Dagnelie
  Associate Professor of Ophthalmology
  Johns Hopkins University School of Medicine
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• Re: photopsias study
• Posted: 2007-12-13 13:13:38 By Marisa P
• I asked Gislin to post this letter here because I know that flashes is an issue for many of us. It didn't take me much time to fill out the questionnaire at all, but I don't use a magnifier.

• Re: Re: photopsias study
• Posted: 2007-12-14 07:14:22 By Reyne K
• Marisa,
  
  Thank you for helping us out in this way! I filled out the questionaire and it only took about 8 minutes to complete. If we all were as helpful as you this world would be a better place!!
  
  ~Reyne

• Re: Re: Re: photopsias study
• Posted: 2007-12-14 17:00:44 By Marisa P
• Thanks for your kind words, Reyne. I am always passing on useful information on a variety of topics...What good is it if you don't share it with others?
  

• Re: photopsias study
• Posted: 2007-12-14 16:39:36 By Bradley C
• I completed the survey. Maybe one day there will be answers and cures for these nagging things one day.
  
  Good luck with your research.

• Re: Re: photopsias study
• Posted: 2007-12-14 16:57:43 By Marisa P
• At least we'll be able to know how these flickers, flashes...relate to RP. Right now people are being told they are migraines without pain, something common in astigmatism...just because doctors don't have an answer.

• Re: Re: Re: photopsias study
• Posted: 2007-12-16 14:24:01 By Benny M
• I can't seem to get the website to come up. It keeps saying " page not available ". Sounds like an interesting topic. Even tried Googleing it.

• Re: Re: Re: Re: photopsias study
• Posted: 2007-12-16 17:22:48 By Marisa P
• I just tried it without a problem. Could it be your security setup? Try again.

• Re: Re: Re: Re: Re: photopsias study
• Posted: 2007-12-16 20:03:53 By Benny M
• Must be. I tried it again and still no results.

• Re: photopsias study
• Posted: 2007-12-18 16:50:47 By AM N
• The survey was easy and fast.
  
  It would be informative if a tally of the responses were provided via internet.
  
  Does anyone know if this is or could be considered?
  
  AM