Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group 2nd request - AS genetic study needs more peeps!

Hi All,

I hope you don't mind that I've posted this in a few different A.S. groups, but....

I posted this a while back in another group and didn't get that great of a response, so I'm hoping the second time will do the trick. The Spondylitis Association and the National Institutes of Health are doing a massive genetic study to determine the ~exact~ genetic conditions that cause AS. Discovering this is a giant step closer to finding a cure. As I mentioned last time, they desparately need participants, both those with AS and those without for "controls". Participants can be from Australia, Europe, or North America. I must say I'm a little confused why there wasn't a much larger response to the call last time. This is a super easy step that we can take to directly fight this disease, and it doesn't cost us a dime! Please let your friends know that they can help too, even if they don't suffer from AS. The study needs at least 400 (!) more people in North America (AS suffers AND non-sufferers as controls) in the next two months. Please review these links, and email the project coordinator today if you can help.

How to help: http://spondylitis.org/research_tasc.aspx
About the study: http://spondylitis.org/tasc_brochure.pdf

Please email the coordinator today! Her email address is:
omolade.ogun[AT]spondylitis.org (replace [AT] with @)

I hope you and your family/friends will take this very small step to help fight AS! Thank you!

Hi MrToyGnome,
Can you tell me what they would need from the participants for the test? Is it just blood samples, or tissue samples? I might be interested if it's that easy and not too far away.

Thanks,
James.

I sent an email to the person you listed below. I only saw places in CA and TX that were conducting the study. I asked if they had any place on the East Coast, more specifically MD that would be conducting these tests. When I hear back, I will post and let everyone know what they have to say.
Sarah

Mr Toygnome,

Corporate sponsors of spondylitis.org are Amgen and Wyeth Pharmaceuticals,(the PreMarin people, who have a lot of stuff either being proved harmful or going out of patent protection fairly recently). Wyeth is currently conducting, or rather, will be recruiting for, phase 4 clinical trials on using Enbrel (etanercept) on Ankylosing Spondylitis alone and in conjunction with sulfasalazine. When I looked at their drug pipeline (things on the way) listing, they had a lot of drugs oriented for females, such as birth control hormones and postmeno. osteoporosis, antidepressants,breast cancer,fibromyalgia, and once again the enbrel and a rheumatoid arthritis drug called TRU-015. I checked their research alliances for any links to autoimmune/inflammatory type research and once again came up with Opsona in Ireland, a pretty new company that is going to specialize in developing molecules to target specific cells in the immune system.

Centacor Biotechnology, another sponsor. ($3 billion a year sales, according to their websight, and a subsidiary of Johnson&Johnson). I checked Centacor's current press releases and they were about a documentary on 3 diseases (that are all treated with biological modifier drugs), a new anti TNF biologic drug, remicade in the treatment of psoriasis, remicade in the treatment of psoriasis (yes there's an echo in here), an anti TNF drug in the treatment of rheumatoid arth, rheumatoid arthritis, remicade and colitits, remicade and colitis, remicade and crohn's, remicade and psoriasis, remicade and psoriasis.

Another sponsor of spondylitis.org is Novartis. Novartis is currently screening potential subjects for a clinical research study to test an "investigational" drug for rheumatoid arthritis that is not yet on the market and the study will be the "first time it will be studied in humans." I also looked at the pdf download of "planned filings" for the years 2007 to 2010 on what drugs were in the Novartis "pipeline" to be further studied or tested and found not too many relevant drugs for Spondy sufferers on the list. There is an osteoarthritis drug called Prestige(lumiracoxib) due to roll out in '07, and another called SMC021 in '10. Well, they're trying to get the lumiracoxib rolled out but it's not yet approved by the FDA for sale in America. I checked the "Prestige" website and it told me in English and in Spanish (I didn't try the Portugese) that I was suppsed to be a health care professional in my country and to log in first. Novartis also makes a very wide variety of drugs for everything, esp. for menopause symptoms, ADHD (Ritalin), and antifungals, also "Zelnorm" (which I think ought to win some sort of advertising award for most obnoxious ad for most useless product.) Novartis is interesting because they are working on that pandemic flu stuff.

The spondylitis.org (SAA) Board of Directors

by occupation:

Rheumatologist specializing in clinical research, patient care and teaching, Los Angeles, CA

Senior Manager in Economic and Valuation Services for KPMG, LLC

Energy Markets Staff Manager for Southern California Gas Company - "I don't have AS, but I originally joined the organization to support a friend who does...

Federal Bankruptcy Judge for the Central District of California, Los Angeles - "Being on the Board of Directors is a privilege and an exciting challenge....

President, Fortuna Group, Portland, OR

formerly a corporate communications professional with Ameritech Corp, Chicago, IL.

Principal at Angeles Investment Advisors LLC, Santa Monica, CA

Retired ophthalmologist and SAA Support Group Leader

Clinical Research Scientist, Abbott Laboratories


~ Now, why did I post all that crap?

I have a bit of a bone to pick with spondylitis.org in that they have had some some real doozies of moderators on their discussion forums, which have turned their forums into pretty much a discussion club on what medications people are taking and what drug reactions they are having. The mods have been very insistant that diet plays not much of a role in health, and their attitude towards low starch is skeptical, I can put up with that, but they are totally oblivious to the role of wheat in some autoimmune processes, which is already scientifically documented. Thus my eternal skeptism with that particular site when it comes to what their true objectives are. They have conceded a small skirmish in the diet wars in that they do mention "some people have found relief but it's not scientifically documented." I also just today, as is my wont a few times a year with them, checked back to their front page and found another WHOPPER right there....

"Ankylosing Spondylitis Does Not Appear to Increase Lymphoma Risk, 9/18/06"

"...patients hospitalised with a.s. do not apreciatively show an increased risk of lymphoma. "

and it quotes some Swedish study from some Annals of Rheum. Dis 2006.

It does not have a link for the study right there. I had to go dig up the study, which was extensively coming up as quoted on google search again and again, because apparently all these different drug manufacturers were quoting it in press releases.

It does go on to imply that this is good news for people wanting to take the anti TNF inhibitors (biologic modifying drugs) because they may increase the risk of lymphoma in patients with Rheumatoid arthritis, whom have a much greater risk than average of developing lymphoma, according to the Cleveland Clinic Journal of Medicine. But it implies from the study that this is not so for Ankylosing Spondylitis.

The study says they looked at people in the database at the Swedish Cancer Registry from 1964 to 2000 who had non H. lymphoma, Hodgkins lymphoma and chronic lymphocytic leukemia. Then they compared them and a control group who did not have lymphoma to a database of people who had been hospitalized for ankylosing spondylitis previously from the Swedish Inpatient Registry. They claim that .05% of patients with lymphoma and .05% of the control group had basically the same percentage of probability of being hospitalized for ankylosing spondylitis previously.

"23 patients with lymphoma and 41 patient controls (without) had a pre lymphoma hospitalization listing ankylosing spondylitis."

They conclude that "patients hospitalized with ank. spond. do not apreciably show an increased risk of lymphoma."

abstract of Swedish study on AS and lymphoma

It is said that there are lies, d****ned lies, and statistics. When I'm looking at that exact same data, I'm seeing that over half (56%, or 23 out of 41) of the spondylitics in the study ended up being hospitalized eventually for lymphoma.

Which came first, the chicken or the egg? Am I missing something here?

I would also like to point out that based on my previous study of all good links posted here to many different topics, that there certainly DID seem to be some sort of increased risk of certain lymphomas and AS. At least that is the case with AS people who are also sensitive to wheat gluten. medicinenet.com/celiac disease

I understand that this is not the same thing as starch sensitivity. But it's also a known factoid if you do a little search on PubMed that you will find citations of studies showing a higher than average incidence of anti gliadin (think wheat) antibodies in the blood of patients with spondylarthropathic diseases. This abstract below says they found 12% of spondies had antibodies showing wheat sensitivity:

http://www.ncbi.nlm.nih.gov/entrez/query...2&dopt=Abstract One PubMed abstract

I therefore, time and time again, must emphatically disagree with every moderator on that websight who keeps INSISTING there is no relationship between spondylarthropathies and disease and diet.

I further must disagree with the intrepretation of the Swedish study of AS and lymphoma, and its prominance and purpose in being quoted all over the web recently.

Any time you take a drug, I think it is extremely important that it be a well researched and honest evaluation of the risk of possible side effects.

Perhaps some of the the other posters here share the same sense of cynicism about SAA, and that's why the response rate is not particulary high.

____________
fixed link. w_r
full Title, "Risk for malignant lymphoma in ankylosing spondylitis: a nationwide Swedish case control study. Published 13 January 2006, Annals of the Rheumatic Diseases 2006;65: 1184-1187 j. Askling, l. Kareskog, p. Blomqvist, m. Fored, and n. Feltelius

Gotta agree with what you are saying. How can any group be considered nutural when they are under the thumb of a larger special interest group? We, on the other hand, are a special group with a lot of seperate interests and a darn sight more honest in our discussions!

Wind,

It made me tired reading all that you wrote much less trying to type all of that..lol

I am so grateful that we have Kickers here like you that are dedicated enough to know and find this stuff out for those of us that can't or don't know how to do it.

Take Care,

Lisa

I emailed to the link that was on the initial posting. Within a half hour, someone from the NIH called me and conducted an interview over the phone. They asked questions about: when I was diagnosed with AS, if I had had colitis, if I had had uveitis, if I had had cardio problems, if I had been HLA tested, and what specialty of doctor diagnosed me. I was asked if I would be willing to sign a waiver for them to receive my medical files, plus any CT, MRI or x-rays. Also asked me to provide a sample of blood. They will provide the FedEx package to send the sample to them. No costs are involved for the participants. They will cover all costs for drawing blood, and any x-rays they might need. After the interview, they told me I was a candidate for the study and they would be sending me the required info.

Hi Windrider,

I was interested in reading the link you posted, titled "abstract of Swedish study on AS and lymphoma" yet it doesn't work for me. I took a quick peek of the url and it looks as though it should work so nothing there I could fix. Any chance you could check/repost it for me please?

My gut reaction (without reading it) is that although ASers do not show the same predisposition for developing lymphoma as seen in the RA patient population, I have been told that, theoretically, chronic inflammation in and of itself is a known risk factor for developing cancers which leads me to question their findings too. I think the stumbling block is that they just haven't been focused on our illness prior to biologics to really have a clue yet... and I suppose now they are finally starting to look since they need a risk comparison to 'after' being on a biologic. Not a huge comfort to me but par for the course.

Thanks!
mig

Hi Wind Rider,

Thank you for that info, I must admit I was not aware of SAA's link to those corporate sponsors. My personal opinion about the health care industry is that way too much is spent on research for "treatment", and not nearly enough on "cure"... there is simply a lot more money to be made by big pharma in on-going treaments. However, I believe our best hope for a cure lies in genetics. So, let's for a moment assume everything you said and implied is true (and I have no reason to believe it's not), which I might sum up as: The SAA is a puppet of the drug companies that dismisses diet and nutrition as a valid AS treatment. I'm not trying to put words in your mouth, that really is the gist that I came away with from your post, my apologies is it is incorrect (I also couldn't get your link to the abstract to work, so I will leave them quoting the lymphoma study alone for now).

Now, even assuming the SAA is a puppet of the drug companies, they are helping to organize a trans-continental, wide-ranging genetic study to scientifically determine the root genetic cause of AS, and while the results of that discovery may be used by said drug companies to develop more effective medications to treat AS, the results of the study are also public (to my knowledge) and can be used by ~any~ other researchers (now and in the future) who are looking for a cure! Oh yes, and we can help them with this study for free by just giving them a prick of blood. Sorry if I'm dense here, by I'm not exactly seeing the downside to this. Even if you are unhappy with the SAA for apparently bending to corporate sponsors, even if more options of better medical treatments are somehow a bad thing, isn't the knowledge that may lead to a cure of the condition that afflicts us every day worth it? Even if the SAA is a puppet and you would never support them, I would argue that you could make them your puppet by getting them to do the things you want to do, and I don't understand why any of us wouldn't want them to do this.

By the way, unless you know something I don't about it, I must take umbrage with your subject of "fishing for test subjects". If in fact this is just a ruse to find more test subjects for medicines then I will be very embarassed, but I have seen nothing so far that would lead me to that conclusion. And if it is fishing for test subjects, why are they so concerned with finding "controls" who do not suffer from AS? Can you back that up with anything?

Thanks again for your post. Sincerely,
Mr. Toy Gnome

Hi there, thank you for posting this.

I understand people's reluctance to trust any association that is sponsored primarily by pharma companies. I really do. However, this study is into the genetics, not into medications, so I don't get the reactions here. What would it hurt to take part? Regardless of the fact that the Spondy Assoc. is involved, does it not help all of us if genetic understanding of this disease is furthered?

I will not be taking part in the study. Not because I don't trust the Spondy Assoc and the pharma companies, but because I'm overstretched right now and don't trust myself to remember to do my part at this end. No point taking part in a study if you don't follow through. I will say that I had the pleasure of meeting Dr. Reveille here in Toronto when I took part in an international study on the most effective way to measure mobility in patients with AS and PsA. He seemed knowledgeable and truly bent on finding answers to this disease.

I've never visited the Spondy Assoc forums, so I don't know anything about their moderators or policies. However, I guess I'm trying to discourage people from throwing the baby out with the bathwater here. Seems to me that understanding the role of genetics in our disease is really important. If nothing else, it could help in ensuring that treatments given us are geared to us and not to our more dominant cousins in the arthritis world. Perhaps in understanding the genetic links, we may find that one link to IBS and Crohns that makes it incontrovertable that there is a dietary aspect to some cases of AS that has been discounted thusfar. If they know what to look for, they might be able to treat us more efficiently and effectively.

WindRider, like Mig I tried the link to the Swedish study and wasn't able to get through. Would it be possible for you to repost it? That study sounds interesting and I'd like to read more.

Many hugs,