Regarding the mysterious biomarker study: planning is underway for a progressive marker study (sponsored by MJFF with industry partners hopefully sharing half the costs--its a big, expensive trial)...the trial hasn't been launched--probably not recruiting patients until early 2010...recruiting will be targeted to folks who can reliably get to the study sites and the sites have not yet been selected so can tell what part of the country will be sensible...more to come down the road and believe me we are counting on the community being of great help. The study population will be de novo patients, meaning recently diagnosed and not yet medicated. So, many pwp in this forum wouldn't likely be eligible but you will likely be connected to such candidates through various networks so everyone can be a resource.

Regarding the motive behind the interview with Dr. Bartus of Ceregene was done purely and simply because we knew there was great interest and hope tagged to the outcomes of the trial and that patients would have lots of questions. As a partial funder of both the phase I and II trials, we had worked with Ceregene and among other things suggested that it would be critical to share as much as possible as quickly as possible (this was our assessment having observed the responses following the Amgen-sponsored GDNF trial fail to meet its end points. So, no angle except transparency and urgency in the face of disappointment. By the way, I'm not suprised folks don't trust each other...don't know if that can be eliminated but, again, we are doing everything we can. Our view/goal is to be a pragmatic as possible.

Regarding the scientific robustness of various stem cell sources, I commented on this not too long ago in neurotalk. (Sorry, I don't know how to search for it--but I think in the thread that talked about Katie Hood's recent Huffington Post). Additionally, I believe we might have some additional information on our site in the coming days in the form of a Q & A on the heels of the Obama executive order. (Sorry, I don't know exactly is being worked on for that piece so may or may not get into those particular issues).

Debi

Thank you, Debi , for your response. I would be a willing "control" subject for this study, even though my husband would not qualify. Madelyn

[QUOTE=paula_w;476697] Women dont' want to donate their eggs.

Of the estimated 40,000 embryos left over from in vitro fertilization and languishing in cryogenic limbo, there must be more than a few women who would turn these loose for medical research.

I won't argue when human life begins, because that is a no-win situation. Surely though we can all agree that human life ends when tossed out with medical waste. Maybe no one has presented the issue in this basic a way before.

To those who disagree, I'd like to understand why it is ok to create so many excess embryos if your intent is to throw them in the garbage once you get the children you want, rather than see them used in potentially life-saving research. If there is a logical answer to this, I sincerely would like to know it. I'm not looking for a religious debate.

Respectfully,
sheryl

I should have elaborated on the women. i'm talking about a harvard study that called for women to donate their eggs, It was a very respectable study and one of the researchers spoke wiith us on a pAN call, emphasizing the need for SCNT to create cells in a lab, give them illnesses and run molecules thru for potential treatment. here's the article that puts out the call.

http://www.bioedonline.org/news/news.cfm?art=2576

As i recall, and i'll go back and look, he got no volunteers at all. But i will confirm or change this.

Religion isn't the only reason people question ESCR. If they can do the same thing with skin, well it's available in abundance. It sounds like it would be cheaper and faster. This is about time, and sorry to say, once again, lack of trust. Without a gestalt of some kind to see where we are, I am just shooting in the dark with my thoughts...second guessing is not acceptable to one who is advanced. Thus i am asking the experts, who are invited to join us or speak thru Debi - and then i will have a truer picture. I'm sorry to say that i don't trust the close mix of business and medicine and with good reason. Are there people out there who could make a nice living on ESCR, keep renewing their grants, and produce nada. This I get from the media and from experience.

i'm picking debi's whole brain, she is letting us release our thoughts with objectivity and without judgement, and we are at a point where this is exactly what we need.....it's probably even good for us chemically.

i'll check for the article that says no one volunteered.

paula

found it:
http://www.boston.com/yourlife/healt...rvard_efforts/




[quote=SherylJ;476748]

Hi Paula, I am behind on the science info on adult cells , though when researching this a couple of yrs ago, remembered that they do not reliably divide and multiply--that their utility was in perhaps delivering genes to cells, but not in regeneration. Reprogramming was formerly done with 4 viruses and some of the viral DNA remained within the newly created cell, to be injected into the target area--newest way of reprogramming reported to be "electroportation" in which genes are inserted via pores, changes the cell to pluripotent, and then these genes are removed prior to inserting them without leaving behind the fragments of viral DNA
http://www.guardian.co.uk/science/20...s-breakthrough

The former studies done with reprogrammed adult stem cells resulted in fusion of the adult cell with cells of organs--not regeneration.

It has been repeated by scientists that ESCs will first be successful in Type 1 diabetes--that the neurodegenerative diseases are more difficult to treat. My simplistic understaning is if one is interested in regeneration, ESCs are needed; if insertion of genes into a cell, adult stem cells would work just fine..Thus BOTH sources of stem cells will be necessary.

Thanks Madelyn! I have not heard it explained in those terms before.
We may not see a cure, but the whole thing is so interesting ......

paula

[QUOTE=Debi Brooks;476735] The study population will be de novo patients, meaning recently diagnosed and not yet medicated. So, many pwp in this forum wouldn't likely be eligible but you will likely be connected to such candidates through various networks so everyone can be a resource.

Debi Can you elaborate on this quote? It seems to me "not yet medicated" would signficantly reduce the patient recruitment process not to mention the liability potential to referring physicianhs who have avoided an RX after a PD DX. Bob C

The study population will be de novo patients, meaning recently diagnosed and not yet medicated. So, many pwp in this forum wouldn't likely be eligible but you will likely be connected to such candidates through various networks so everyone can be a resource.

Sorry Paula, I turned down a different fork in the road of ESCR than you were discussing. I tried very hard not to be judgmental, but to seek facts that would help me understand the other side of the issue.

As it turned out, the link you provided illustrated the point that research of any kind can be set up to fail by virtue of the parameters. In this case, women in MA were receiving $5,000 to donate eggs for reproduction, and nothing to donate those same eggs for research. It doesn't surprise me that the donated eggs are going to fertility clinics.

"...thousands of women give eggs to fertility clinics every year in the United States, for fees averaging about $5,000 per person. But a 2005 Massachusetts law makes payment illegal when eggs are used for research purposes.

"We think that is why people aren't participating, particularly when they know they can do exactly the same thing for another woman's reproduction, which is an equally lofty pursuit, and be compensated well," Eggan said.

Prohibiting payment is meant to insulate scientists from charges that they are coercing women into controversial research.

But other ethicists see the law as unnecessary. When paying women for egg donation, "There does not seem to be any compelling reason for making a distinction between reproduction and research," said Bonnie Steinbock, a bioethicist at the University at Albany, State University of New York.

I have no idea which kind of stem cell research is most promising, but I do know that we must be able to put our trust in the scientific advisory boards, etc. who use their knowledge and experience to make funding decisions. Until we build this trust, we are back where this thread started... too few patients willing to participate in clinical trials.

sheryl

Am interested to know how 'de novo' works when recruiting for a PD trial, when PD is often diagnosed by response to sinemet, when many people complaining of PD symptoms spend time with a dx of 'possible' or 'probable' PD, sometimes stretching for months or even years, under the observation of their neuro - and even well experienced neuros sometimes have difficulties with dx. And then there is the issue of 'atypical' etc ....... If the symptoms are mild enough for the doctor to recommend a delay in drug intervention then maybe trial participation is not so appropriate for the truly de novo possible pwps? I understand the need for trial participants, and why it is better that they should not have had any medical intervention, with almost any other disease this would make total sense; so there are questions there like how many of those de novos actually do have ipd - if they do is this verified by dat? which is also not 100%........... and is this before recruitment or after? It seems that these factors would very much limit those eligible for trials, that there is a fair margin for error even before recruitment..... and that those in the de novo stage with a lesser knowledge of the implications of a pd dx may not have the same motivation to participate..... (for instance,there have been more than a few people on the forums who have described an initial 'denial' stage to their pd journey.)

Lindy


[QUOTE=bandido1;476906]

Am I the only one who feels that participating in a study that has no chance of preserving my existence due to time frames, subject matter, or similar restrictions is a losing proposition? And that the hallowed scientific method reduces my life to an academic exercise. There is an old joke in business describing a ham and eggs breakfast- the chicken took part but the pig was committed.

I think it has value to fill in the gaps in our knowledge as much as we can. But if you want people to take part in trials, go to them and say "This cured a rat and a monkey with no ill effects that we could find. You want to try it?" No controls. No sham surgery. Just a bunch of desperate people taking an educated risk with all the cards on the table. Bring Whitton's EX-4 trial within driving range and I'll sign up if I'm not a control. Why? Because it might cure me! Self interest is a very powerful recruiting tool.

Now, if you'll excuse me, I'll go back to the grumpy corner and leave nice people alone.