I’m working on an investigative story on fake news in the stem cell and regenerative medicine arena.
Is there a growing stem cell fake news problem in the biotech world?
More broadly, the SEC is cracking down on the mess that is fake biotech news, but what about publicly-traded stem cell biotechs more specifically?
Already in the past year I’ve seen examples of possible stem cell fake news.
If you have any tips about specific instances of fake news in this area please contact me (knoepflerATucdavisDOTedu).
I have a bad lower back. My pain management Doctor told me about the stem cell injection for my back. I was just wanting to find out if it works.
My insurance will not pay for any part of the shot. It is a $5,000 shot.
So I wanted to know if it was worth the chance that it will help.
By the way I send you mails before ( but I didn’t get answer are you really asked people who did “not conventional approach ” of Médecine what THEY really think? About doctors and conventional Médecine ?
Hello Dr
Paul S. Knoepfler
I read your publication :”
The Stem Cell Hard Sell: Report from a Clinic’s Patient Recruitment Seminar”
I have to tell you it’s really good that you published this but it doesn’t help for real information I can explain why :
I’m just a mother ok my son had anoxic injury only 1 year an et half before. So yes I’m searching for best therapy ( yes he has brain damages CP but not exactly because it’s Anoxic injury….)
And yes I already put him in database in Duke University hope to be taken in the next allogenic clinical trail in Duke ( I send already some mails to Dr Kurtzberg as well in order to educate muself and to get real informations about risks and potential and types of stem cells of the future study)
I can describe you in pints the real problems to find good scientific informations (from the point of vue of mother):
1) there is no database for ordinary people to find real clinical trail ( I mean we can’t be sure)….
https://clinicaltrials.gov/
Of cause we all know and use in our research BUT: for example clinical trail that may be will start in Duke I found not there ( it’s not yet published on clinical trails i get informations from other mothers on fb page that may be Duke will start new clinical trail soon with allogenic stem cells … I send mail to Duke I was “lucky ” to get answer and enter my son in screening protocol naw I just wait contact them from time to time and see that this trail will be later than they said before…. but I stil hope…) i contacted them in July 2016 … trail not scheduled yet in duke not published on clinicaltrails.gov
But the problem is: I know naw they don’t take more applications ( too much already I imagine) …so in reality somebody’s child taken in trail in Duke is like a blessing….
Can you imagine haw they have to feel other mothers (fathers as well) ??? What they have to feel about?
I’m mother from France ( I didn’t find any trail in Europe for stem cells for my child) .
And the biggest problem it’s that I contacted scientists (researchers) directly to find out if there somewhere something….
Because we don’t have good datebase !
On
https://clinicaltrials.gov/
You can find that clinics (from Panama / China) doing as well clinical trails as well as Duke ou other university so haw we suppose to make difference ?
Haw we can find if their publications scientific or not ?
Examples:
You can find Beike Biotechnology
Do clinical trails :
https://clinicaltrials.gov/ct2/results?term=Beike+Biotechnology&Search=Search
This clinic sell stem cells so haw we can deferring their trails and publications?
Other example:
( I really did my research i’m Russian origins so I called to Russia I asked Academy of science ) I also asked by mail Dr Kurtzberg but didn’t get answer….
Do you know about Dr Yury A. Romanov, MD, PhD, Laboratory of Human Stem Cells, Institute of Experimental Cardiology, National Cardiology Research Center???
I found out that he is doing real scientific research ( i called academy of science in Russia)…. he is doing publications :
And his study:
Human allogeneic AB0/Rh-identical umbilical cord blood cells in the treatment of juvenile patients with cerebral palsy. ???
https://cdn.fbsbx.com/v/t59.2708-21/18219989_10212368696908602_6249820144650944512_n.pdf/2015_Human-allogeneic-UCB-cells_cerebral-palsy.pdf?oh=bca268ad07709644206d0f7753c9d4b1&oe=591623F7&dl=1
BUT:
he did this study and publication in collaboration with:
“CryoCenter” – Center for regenerative medicine
I called CyroCenter yes he is on direction position their … director of science their ….
National Center for Obstetrics, Gynecology and Perinatology,
Akademika Oparina Str., 4, Moscow, Russian Federation
But: Cryocentre selling stem cells therapy for CP children’s and injuries!!!
I checked yes they have their license (recognized in Russia officially by Federal Service on Surveillance in Healthcare and Social Development … we have no FDA in Russia but it’s like FDA in Russia ;)…
What does it mean ????
This question with licenses that’s a problem :
In USA (you have the same problem all centers selling stem cells therapies has license from FDA)….
And we have different systems in USA and Russia so I found: that “Use of cord blood nucleated cells in the treatment and rehabilitation of patients with neurodegenerative diseases, traumatic and perinatal brain injuries” was approved by Federal Service on Surveillance in Healthcare and Social Development (Roszdravnadzor).
They don’t make HLA- matching….
They do :intravenous infusion of allogeneic human leukocyte antigen (HLA)-unmatched umbilical cord blood (UCB) cells.
I still can’t figure out is it legal ? In russia this center and this treatment ? If it’s published by recognized scientist from Russia (Dr Yury A. Romanov) and in the same scientific
While you are at it, any thoughts on the recent Capricor Phase II failure?? – https://www.medpagetoday.com/cardiology/cardiobrief/65469