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• CNTF update
• Posted: 2008-01-29 12:56:14 By Paul S
• So I went for my 3-month visit and was informed of the change in the study.
  
  Originally I was to have the implant removed after 1 year and then have several follow-up visits to make sure things we OK.
  
  Now at one year, I have the option of leaving it in and then I will have 1 final follow-up visit 6 months later and then the study is over, no more visits.
  
  Since the capsule has so far show no negative impacts in studies this change saves Neurotech a lot of money on the explant surgery. Unfortunately, since there is no long-term follow-up we may never ultimately know the long-term benefits.
  
  

• Re: CNTF update
• Posted: 2008-01-29 14:36:11 By Nikki s
• Hey Paul,
  
  are you late or early stage? are you noticing any improvements?

• Re: Re: CNTF update
• Posted: 2008-01-29 16:23:12 By Paul S
• late, not really any significant difference.
  
  Paul
  

• Re: CNTF update
• Posted: 2008-02-02 21:40:17 By Natalie C
• Just guessing here, but I would say that they must expect any 'benefit' to be obvious within 1 1/2 years. If you are late stage, then maybe they are just testing you for any possible improvement vs. slowdown in progresstion as it is already so far progressed. I'm interested as to why your participation is only 18 months and others are 2 years. Possibly late stage vs. early stage? Anyone out there know?

• Re: Re: CNTF update
• Posted: 2008-02-02 22:30:46 By Paul S
• I do not see how they can determine effectiveness in 1 or even 2 years. The Vit A study was 5 years and could not eliminate statistical variations. With progress being very different in every patient it seems almost impossible to prove benefit in stopping/slowing progress in a 1-2 year study.
  
  This has always been my main concern with the study.
  
  My guess is that the results of this study, if they publish as positive, will be as contraversial as the Vit A study. I was told a longer-term study of the capsule was underway to determine its ultimate lifespan, which is unknown at this point.
  

• Re: Re: CNTF update
• Posted: 2008-02-05 23:08:04 By Carol C
• I believe the early stage participants have the 2-year implants, where the late stage folks have the 1 year implant. Since it's progressive, the early stage people would need longer to determine that it is not progressing, whereas the more severely effected may notice even slight improvement sooner. I bet since so many different mutations are known to cause apparently the same result, there could be as many different responses to the same treatment. In animals, results have come quite quickly, so I think they had reason to expect this in people as well ( but who knows?)My brother (late stage) is having quite dramatic improvement, but he has an unusual form (cone-rod dystrophy vs. rod-cone). Maybe rod-cone folks will have results after longer implant time. Who knows what the next phases of research will bring! I read they just implanted 10 "profoundly effected" RP'ers ( read: blind), must believe it can bring sight back to some extent, or that at least there is some hope of this. Carol