Hearing Loss Associated with Usher's Syndrome Significantly Improved in Clinical Trial

[NatureHiker]

Press link: https://www.prlog.org/12657568-ushers-syndrome-improves-with-stem-cell-treatment-in-scots-2.html

Clinicaltrials.gov: https://clinicaltrials.gov/ct2/show/NCT03011541

But what was even more exciting was that the patient had improved hearing. The patient's audiologist had told the patient that recovery of biological hearing was physically impossible and she had never witnessed it happen- but the test of hearing was unequivocal and showed about a 15 decibel improvement in the right ear and an approximately 10 decibel improvement in the left ear. This was enough for the spouse to notice the patient could hear things they would otherwise not and to have a noticeable improvement in speaking because of hearing their own voice better.

Wonder if this will end tinnitus related to Usher's syndrome.

 

[jer]

Personally if I read this correct, I think this could have huge implications outside just this narrow study. Because it seems to show that with a stem cell treatment of a persons own bone marrow, they saw a big improvement not only in their eye sight (the main focus of the study), but In their hearing as well.

I think this is almost a continuation of what @attheedgeofscience was doing with his stem cell treatment. Of course he was using different stem cells. But again, this proves that stem cells (of various kinds), could have a big impact on hearing and possibly tinnitus too!

 

[Fabrikat]

this proves that stem cells (of various kinds), could have a big impact on hearing and possibly tinnitus too

Surely, this treatment is not growing new hair cells in the cochlea. It is regenerating nerve cells instead. Do you think so?

 

[threefirefour]

Surely, this treatment is not growing new hair cells in the cochlea. It is regenerating nerve cells instead. Do you think so?

Yeah this is pretty cool. I try to avoid optimism but I think this is big. I really hope this could help lead to a treatment during my lifetime.

 

[Jim51042]

Surely, this treatment is not growing new hair cells in the cochlea. It is regenerating nerve cells instead. Do you think so?

It would be awesome if there was imaging technology that could definitely answer that question/theory. Soon hopefully.

 

[jer]

The article stated that it did not know what it did with the ear, that's the thing. It just said that something was happening and she regained some of her hearing. Unless I read the article wrong.

 

[Reinier]

This looks like serendipity.
Now research needs to repeat this. Later on they can find why it works

 

[Aaron123]

There are a few things to note about this:

1) the "article" is a press release put out by the company.
2) although there is a clinicaltrials.gov entry, this "trial" not the same as a trial by Otonomy, Audion, etc.
3) being registered on clinicaltrials.gov does not mean this "trial" is FDA approved.
4) this is essentially a stem cell clinic experiment where people pay $20,000 to participate.
5) to the extent that you want to think of it as a trial, it isn't randomized, placebo controlled or anything else.
6) It's definitely beneficial for the people running the trial: if they get $20,000 for the 500 people they say they want to enroll, that's $10,000,000. On top of the the 300 people in the first SCOTS "trial".
7) Some people have claimed that they have lost their sight in the trial:

"But not every story of stem cell therapy has such a rosy outcome. George Gibson was in his late 60s when he partially lost his vision during heart surgery. He says he paid $20,000 to get stem cells injected into his eye with the guarantee that he would be able to read a few more lines on an eye chart. Gibson claims that instead, he lost vision in that eye completely, but his assertions could not be verified. There have been other reports of vision loss in stem cell procedures peformed elsewhere. Gibson didn't get one of the first-come-first-serve slots to speak at the hearing; instead, he and his wife stood outside the meeting room during breaks with big signs that read, "I lost my sight to the SCOTS stem cell procedure!!!""

(https://www.scientificamerican.com/...ates-and-critics-push-back-on-fda-guidelines/) There aren't press releases about these cases.

There's more discussion here https://ipscell.com/2016/02/study-t...s-into-eye-charges-20k-raises-many-questions/ (there are comments from people who claim to be both helped and harmed), here https://www.sciencealert.com/a-blin...thanks-to-a-controversial-stem-cell-treatment, and here http://www.stemcellsfreak.com/2013/02/md-stem-cells-scam.html

Perhaps there is something going on here, but in the absence of some restrictions on inclusion (beyond having $20,000 to spend) and standard trial protocols it isn't clear what can be learned.

 

[jer]

Thank you very much for that update @Aaron123

 

[Markku]

There are a few things to note about this:

1) the "article" is a press release put out by the company.
2) although there is a clinicaltrials.gov entry, this "trial" not the same as a trial by Otonomy, Audion, etc.
3) being registered on clinicaltrials.gov does not mean this "trial" is FDA approved.
4) this is essentially a stem cell clinic experiment where people pay $20,000 to participate.
5) to the extent that you want to think of it as a trial, it isn't randomized, placebo controlled or anything else.
6) It's definitely beneficial for the people running the trial: if they get $20,000 for the 500 people they say they want to enroll, that's $10,000,000. On top of the the 300 people in the first SCOTS "trial".
7) Some people have claimed that they have lost their sight in the trial:
(https://www.scientificamerican.com/...ates-and-critics-push-back-on-fda-guidelines/) There aren't press releases about these cases.

There's more discussion here https://ipscell.com/2016/02/study-t...s-into-eye-charges-20k-raises-many-questions/ (there are comments from people who claim to be both helped and harmed), here https://www.sciencealert.com/a-blin...thanks-to-a-controversial-stem-cell-treatment, and here http://www.stemcellsfreak.com/2013/02/md-stem-cells-scam.html

Perhaps there is something going on here, but in the absence of some restrictions on inclusion (beyond having $20,000 to spend) and standard trial protocols it isn't clear what can be learned.

I'm giving this "Post of the Day" award. A fantastic example of what adds significant value to a thread. (P.S. Sorry, ironically my post really didn't add much value - but @Aaron123 deserves the kudos.)

 

[RODRIGO]

Two drugs widely used by man ... impotence and baldness, were discovered looking for other solutions ... you never know!

 

[lymebite]

Here is an update on the SCOTS study with bone marrow derived stem cell (BMSC) therapy, published in November 2017.

Results: Following therapy in SCOTS, 80% of patients experienced improvement in Snellen binocular vision (P=0.029) with 20% remaining stable; 73.6% of eyes treated gained vision (P=0.019) and 15.9% remained stable in the post-operative period. There was an average of 3.53 Snellen lines of vision improvement per eye with an average 22.74% and maximum 83.3% improvement in LogMAR acuity per eye. The average LogMAR change in treated eyes was a gain of 0.364 (P=0.0089). Improvements typically manifested no later than 6 months post procedure.

http://sci.amegroups.com/article/view/17421/17703

 

[jer]

Hey, it was the same way with trobalt. It wasn't designed for tinnitus but it helped very much. Just too bad about all the side-effects.