Please login to post a response.

• phase ll study of cntf/ntc-201
• Posted: 2012-08-20 14:15:15 By Randy W
• There is a good possibility that I will be accepted to participate in a new study involving the cntf implant to study safety and efficacy as this implant relates to preserving cone cells in subjects with RP that still have good central vision. the ID is clinical trials.gov ID NCT 01530659. My questions are for anyone out there who has received the cntf imlant. what adverse effects have you had? any complications, discomfort, vision loss. and would you do it again? or any other comments or suggestions you may have would be welcome thanks, Randy

• Posted: 2012-10-03 12:05:20 By Robert M
• Hi Randy,
  I was in the Phase II/III early-stage RP study for the CNTF implant. This study was testing whether or not the CNTF would slow the visual field loss. Had the surgery done June 2007 and the study concluded December 2009. I elected to keep the implant at the end of the study, so I still have it in my eye. One side effect that I had (and still have) is that my pupils are different sizes. Also, the number of floaters increased mildly in my eyes - although that may be due to the surgery and not the implant.
  
  Based on the research results that they told me, there was not a statistically significant difference in visual field decline, so it doesn't currently appear that the CNTF slowed visual field loss. However, the retina thickness did increase, and it remains to be seen whether or not this will increase visual field. I have noticed that my central vision in my treated eye is better than the untreated eye. Before the implant, my prescription for both eyes were pretty much identical.
  
  Overall, I had a positive experience and would do it again. However, I know that many of the participants elected to have the implant removed at the end of the study, so keep that in mind.

• Posted: 2012-11-30 17:06:40 By Randy W
• Hi Robert,
  I can never tell when this msg board is working...anyway, thanks for your input on your experience with the cntf study. I was selected to participate in the latest study that is supposed to determine whether or not the cntf increases cone density. I had the surgery on Oct 2 and everything seems to be pretty much normal as far as my vision. before the surgery, I had 20/20 in both eyes with about 20-30- degrees field in each eye. I go back for measurement imaging in March to see if there is any improvement. Since you elected to keep the implant, this may be of some interest to you especially if you received the higher dose as we all did. I would be glad to keep you posted as to the results and any improvements in cone density and spacing. If you are interested please email me personally at patran2@gmail.com cheers