Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Taking Kickas Forward

Ok. All formalities aside, I thought that now that I have introduced myself to this community I could start offering some concrete steps by which kickas might be further developed to better serve its constituency. I stress that any recommendations I present to you now or in the future have been put forward with the best of intentions and interests of the site in mind. Don’t come down on me like a ton of bricks as this serves no purpose.

A quick question: I have seen numerous surveys circulated on the forums. Is anything being done to document the results of these surveys?

I am proposing the incorporation of collective spreadsheets that are accessible from the server to which members can input data directly. In the long run I could see spreadsheets of this kind address and document a myriad of issues facing patients with AS such as response to treatment in the form of medication, diet and exercise. To keep things simple, as a start I would suggest four separate spreadsheets detailing the symptoms of sufferers divided into four main categories:

1. HLA B27 positive Males
2. HLA B27 negative Males
3. HLA B27 positive Females
4. HLA B27 negative Females

The level of detail of the variables involved would have to be carefully considered. It would be better to have more than a yes/no response to SI joint pain, but on the other hand determining the number of people suffering from AS who experience discomfort in the last joint of their little toe would be overkill.

While I am not in the business of exclusion and don’t want to have people feel left out, for the sake of the integrity of the data it would be recommendable that only people who have received a confirmed diagnosis of AS should contribute.

One of the biggest frustrations in my personal journey towards getting a diagnosis has been the ambiguity of rheumatology. Of all the medical professions, rheumatology has got to be the vaguest discipline! This would be a statistical exercise. The kickas user base is getting to a size where it could offer researchers access to data on a scale which would be otherwise impossible in localized studies. Why don’t we offer them a hand, and give them all the information they need! It would take each person here no more than 5 minutes to input their data, but could potentially cut years off the amount of time it would take researchers to collect and achieve similar results.

Over to you!

Bro

Bro - Interesting hypothesis for research, but, whose research? Your outlined proposals of spreadsheets and documented data with their 'exclusions' are not valid for this Forum: (sic) "on the other hand determining the number of people suffering from AS who experience discomfort in the last joint of their little toe would be overkill." (and) "only people who have received a confirmed diagnosis of AS should contribute." Yet you determine that rheumatology has been the "ambiguity of your personal journey towards a diagnosis...!" Hello?

How many posts does one read here of that self same journey? That journey of ambiguity? How many Bro? Far too may is the answer. Far too many 'whys' and 'where-to-fors' A research spreadsheet such as you outline has no place here.

A research database of the 'Member's' devising, i.e. put together by the admin and mainstay of this Forum group together 'with' ALL attendant 'Members' might indeed hold relevancy, but the *details* of such a spread sheet would be upto the devising of ALL members. Exclusions, none. We have all been at the barrel end of exclusions...we don't need to offer ourselves up to any more target practice.

With respect -

Molly
Keeping on Keeping on (with relevance and determination)

Bro, I am not sure if you know this or not, but there are many contributing people who are regularily on this site, posting, replying, and/or just reading daily that have NOT BEEN DIAGNOSED with AS by a doctor. I think excluding them in 'your research' would be a big mistake. I am not sure of the actual percentage of people here who haven't been diagnosed as of yet, but I am fairly certain that it would be quite high [especially with the women due to the nature of the disease and the actual doctors!!].

However, most people do know whether or not they are male or female and whether or not they are HLB27 positive or negative!!!!! Shouldn't this be enough to be 'included'???

Also, a big part of the KickAS FAMILY and this site has to do with 'people' and not statistics. This site is for communication between the people with AS and other conditions, as well as the information this site holds [which is vast] that provides answers to people's questions when they are 'researching' AS. You can't take this site and the people involved and reduce it to a spreadsheet.

I am not trying to 'come down on you like a ton of bricks' but you have hit a nerve, and I am afraid I will not be the only one to feel this way!

Rita

[btw I have NOT been diagnosed with AS, YET]

Bro,

I have thought of what you're suggesting before, and I support you.

If the site webmasters can come up with appropriate spread sheets and other ways of collecting research information (mainly voluntarily polls, I suppose), then we ourselves can spread the rumor among our Doctors.
Some members here are being treated by world known rheumatologists.

An initiative like this could, for example, give a proper push to the study of diet influence on the course of AS, a subject under great debate.

Oded.

Rita. First of all, let me set one thing straight. This would not be "my research" - it would be the research of kickas and all its members. And like you, I have not been diagnosed with AS either, so in this sense I would be "excluded" from any research that might take place under these conditions.

The reason for suggesting only people who have a confirmed diagnosis of AS participate is because it makes the data more credible for anyone looking at it from the outside. Not that I am an expert, but when you do research you want to eliminate as many of the variables as possible. If you have people with different conditions participating, the data that would come from the study would not be able to contribute in the slightest to building on the existing body of knowledge on any one condition. I know that many members here have multiple conditions, so perhaps it could be some use there - Pete has just started up a poll to address this.

But you see what I mean? This would be nothing personal towards anyone, and I think you are looking too much at the word "exclusion" without putting it in context. And of course the parameters for such a study should not be drawn up by one person only, without input from the community.

Bro

Bro,

There is no way you can take a group such as ours and expect to gather any data or statistics that would be considered accurate by any scientific standard. It may be "nice to know" information...such as the poll I just posted...but that's all it could ever be.

Your ideas have been suggested in the past and the answer is always the same...we are simply a support group and have no desire to be a control group for a research project. If you would like to do such a project, I'm sure there would be many members who would go to your site and participate.

If that's what you decide to do, I wish you all the luck and will be looking forward to seeing the results

Hi Bro. Ooops, I do tend to get a little emotional at times! But it is morning now, and I am seeing a little clearer. So I apologize I may have gone on a bit too much of a rant!

I do understand that some need to be excluded from that particular type of research. I think what I meant to convey was that there are so many variables with the AS condition, such as all the accessories [read: other medical conditions!] that sometimes show up with AS. I think it will be kinda hard to pin down a certain set of parameters. Do you know what I am trying to get at? It is such a broad subject.

Also, because so many of us would be excluded from the research, a VAST amount of knowledge/experience would be wasted. I can think of one woman on the site who has been dealing with AS and it's accessories for 15 years now and she has NOT had a firm diagnosis of AS {I believe I have that right}. Her experience wouldn't 'count' and I think that would be a mistake.

Also, there are a lot of different polls and surveys that can be set up on the site. DakatoDan has one going right now, and TiredTom has 3 research/survey/question type going on right now as well. I think those do well in this forum, but wouldn't do well with 'proper' research, again due to the many variables.

I apologize again. I do think it is great that you are such a thinker and that you post such thought provoking posts! And along with others [Strutsy/Molly etc.] it would be nice to know a little bit more about YOU. That is what this site is all about support. No one need fear posting on this site that is what it is for [although some posters may be subjected to a little rant now and again!]. KickAs is all about people, feelings, situations, fears, support, help, research, you name it!

Cheers,
Rita

Cheers Rita!
Yep, I like this place just the way it is. Nuf said. Hospitals and clinics are fantastic places for research, but kickas is food for askicker's soul.
Many pain free days to all.

Interesting approach regarding exclusions.

There seems to be no reason not to include everyone and anyone with a story to tell, as long as you also collect data on whether a formal diagnosis from a medical practioner has been made.

Personally, I would be as interested to see the outcomes for the non-diagnosed as the diagnosed and would like to see all having an opportunity to contribute. There are many possible reasons for non-diagnosis and the criteria for diagnosis may well vary across communities.

>> There are many possible reasons for non-diagnosis and the criteria for diagnosis may well vary across communities. <<

There lies the crux of the matter. Just for starters I have three different DX from three rheumy consultants and one doctor disagreeing with the lot - i.e. coming up with a fourth DX! If ALL members of the forum were to consult with the same rheumy, undergo the same tests with the same labs, X-Rays from the same radiographer being read by the same consultant radiologist etc etc then one may have a great study - would be impossible to do!! So, all one could do would be to collect, sift and categorise information provided by members of this forum. Decide 'what' information and make it as broad as possible.

At present we seem to have a couple of such studies underway. When done, then each member could print it out and take along to their rheumy, doctor, et al - present it to em an see where it might lead...

Molly
Keeping on Keeping on