As reported on our main website at ( see this story ) the US company Neurotech has announced the latest results from clinical trials. They have been trialing the delivery of a growth factor (CNTF) using their NT-501 encapsulated cell technology in patients with RP (and in AMD patients as announced earlier this year), in an effort to demonstrate that they can arrest the degeneration of photoreceptor cell in the retina.
Well, results are in, and you can read the full Neurotech press release at the link above, so I’m not going to duplicate it here.
The good news is that the technology appears to work and appears to be safe. The company report positive “biological effects” and a thickening of the retina in the treated eye as compared with the untreated one. Coupled with the positive results in AMD patients it is reassuring to know that progress is being made in terms of the technology needed to deliver CNTF to the retina effectively and safely.
The not-so-good news is that over the 12 months of the trial, no patients saw improvement in visual function. However the company claim to be optimistic that this will change over time and that 12 months is a relatively short period in RP terms, and this is true to be fair. However there will be disappointment both at Neurotech, I’m sure, and amongst people with RP in the USA and around the world, including our members.
The fight to find a treatment – to preserve any sight remaining for anyone with RP – is rightly a high priority for us, similar organisations around the world, and commercial companies with an interest in developing the technologies we need. We are as keen to see this happen as we are to see an outright cure from gene therapy, stem cell therapy, retinal implants, or other innovative approaches.
Once again we are reminded of the need to temper our optimism and excitement at clinical trials taking place around the world using various therapies to treat RP, with caution about the timescales involved in. For me, this is a key lesson again.
Tags: clinical trials, growth factors, neurotech, retinitis pigmentosa
June 16, 2009 at 1:09 pm |
… another research project that doesn’t work!
June 16, 2009 at 4:53 pm |
Hi again Alan
It’s important to note this wasn’t a’project’ as such, at least not one of ours, we have not been involved in funding it at all. The point I was making is that too often there is an imbalance in reporting … between optimism and realism over timescales. This particular trial is run by a COMMERCIAL american company. The RP batch of patients may well yet demonstrate positive results but the long term degenerative nature of the disease means that this will not become evident in the 12 months of the trial so far … quite reasonable really I think.
Keeep commenting
David
July 29, 2009 at 8:39 am |
Hi David,
I am really disappointed with the results that Neurotech have achieved from their latest Clinical Trial and have to say that this is a blow to all RP sufferers around the world as Neurotech and their sight saving drug CNTF / NT501 was our last and only chance we had of ever stopping the deterioration and reversing the devastating effects that RP has on eyesight.
…
I am devastated by this news because I have been following the progress of Neurotech very closely and I was expecting better results. The reason for expecting better is that Neurotech are an American Bio Tech company who work in the real world of commercialism, they have commercial backing and commercial funding and have worked extremely hard in such a short space of time to develop their drug NT501, so much so that their promising research was even given fast track status by the FDA.
… if a company like Neurotech cannot make headway into finding treatments and cures with commercial backing and commercial money then what chance have we got with part time research teams around the world who are seriously under funded ?
So to answer … it is only progress if it works and it does not work so therefore it is not progress.
Regards
Alan
July 29, 2009 at 7:26 pm |
Whilst I understand your frustration I would disagree that this is the only prospect for treatment. Also, it may yet be demonstrated as effective, we know the timescales for changes in an RP patients sight are generally longer than for AMD.
The research teams we fund aren’t ‘part time’ by the way, but I would agree we need to get more money directed into RP research anyway.
Kindest
David
September 20, 2009 at 7:07 pm |
I’m surprised at the publication of no results, as my brother and 4th cousin are both in the CNTF study, and both had positive results. My brother had a best corrected acuity of 20/80 at the start, and at 1 year, had 20/60, and at 18 months, 20/40. He was told he had the most improvement of anyone in the study. Our cousin had measurable improvement in field of vision, both chose to keep the implant. Our family has XLRP, a type where probands can either exhibit Rod-Cone or Cone-Rod Dystrophies. The only thing I can guess is that a certain amount of improvement can occur temporarily due to the body’s response to the trauma of surgery, and maybe they are waiting to confirm these improvements. Or, maybe by chance few people with XLRP were pulled into the study, and this treatment will be found to produce a quicker response in those with XLRP. The actual report said that “no trend in improvement ” was noted, not no improvement at all. At least 2 people that I know personally had improvement. I can not explain it, but there it is.
September 21, 2009 at 9:03 pm |
OK CArol, good point about the wording of the report as well. It seemed to me that the big question is over the time frame in which a result can be demonstrated, and how much longer it is for RP than for AMD. We watch Neurotech with interest of course. David