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Topic: Proposal for a Global Cluster Headache Database (Read 1666 times) |
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cluster
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Proposal for a Global Cluster Headache Database
« on: Sep 12th, 2005, 1:13am » |
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Dear Clusterville - for your information, this letter was sent to the IHS, the WHA and many others Sept. 1st, 2005.
To:
The International Headache Society
The World Headache Association
To whom it may concern …
Proposal to establish a Global Relational Database
with Cluster Headache Sufferers Data
The need for statistical evaluation of various aspects of Cluster headaches is documented by
the variety of surveys which already exist. A good and well known example of such a survey
can be found at http://www.clusterheads.com. This survey was started in 1999 and has
received input from 12026 sufferers by now.
– Why, yet another survey?
Do we have one with a sound scientific background yet?
Aren’t there perhaps new questions
to ask the patients, because of new knowledge, new treatments? This proposal is not just
about another survey. This proposal is to establish a relational database on a global basis and
perhaps to include existing data sources.
- What is the difference between statistic surveys and a relational database?
The statistics give us results. The relational database does this too and can answer questions.
An example for those of you who are not familiar with relational databases:
52 % of sufferers smoke, 10% drink alcohol daily, 67% are episodic, 13% are chronic only.
These are simple statistic results.
But how many of the chronics drink and smoke? Questions
like this could be answered evaluating such a relational database.
Another example:
Treatment “BANG” does not work for 20% of the patients.
How many of them do drink alcohol, smoke, are chronic or are episodic?
Use your own knowledge and imagination, any statistical question, even much more complex
ones than the above examples could be answered.
Please read the proposal below and forward
this message to everybody who might be interested.
You have the expertise, contribute and edit this proposal as you like. Please discuss it at the
next convention, and please, get it done.
I am a cluster headache sufferer, with no medical background. I am convinced that such a
relational database would help to understand more about Cluster Headaches.
Yours faithfully,
cluster@gmx.net
Please reply to this email address if you
-want to know my name + address
-need more information and/or
-would like to have this text in e.g. MS Word or PDF format
----------------------------------------------------------------
Proposal to establish a Global Relational Database
with Cluster Headache Sufferers Data
Target:
To define, to develop, to evaluate and to publish a global relational database with cluster
headache patient data including:
- Sufferers personal profiles e.g. age, gender, etc.
- IHS Headache Classification Criteria
- Medication + helpers and their effectiveness
- Triggers – What triggers episodes and/or attacks?
Step 1 - Contact, involve, distribute and discuss this proposal
- IHS + WHA
- National Headache Societies
- Medical Research
- National cluster headache support groups
- WHO, Government and Non-Government organisations
- … to Whom It May Concern
Step 2 – Establish Working group(s) + Leadership Organisation
- Define further proceedings and targets
- Define responsibilities, resources required and timing plan
- Establish project funding required + Find budget: Government, Sponsors
Step 3 – Data Definition
- Define data criteria to be collected + draft questionnaire
- Publish draft questionnaire for comments
- Re-define questionnaire
Step 4 – Data Collection
- Web based, local languages
- Paper through doctors and support groups – manual/OCR input?
- Interviews?
Step 5 – Evaluate + Publish Database and Results
- Internet
- Provide various data formats to allow further data evaluation by everybody
Please support this proposal and distribute it to everybody who might be interested.
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Pinkfloyd
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Re: Proposal for a Global Cluster Headache Databas
« Reply #1 on: Sep 12th, 2005, 1:50am » |
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on Sep 12th, 2005, 1:13am, cluster wrote: A good and well known example of such a survey
can be found at http://www.clusterheads.com. This survey was started in 1999 and has
received input from 12026 sufferers by now.
– Why, yet another survey?
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Well, because the above noted questionaire says things like only 8% of those 12000 people list 02 as the best abortive treatment, but does not take into account how many of those 12000 had even tried 02 as an abortive. So, do only 8% of clusterers find 02 very effective or 90% of those that tried it? If people see those stats (8%) they may not want to even bother.
on Sep 12th, 2005, 1:13am, cluster wrote:
Do we have one with a sound scientific background yet?
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I think there are a few.
on Sep 12th, 2005, 1:13am, cluster wrote:
Please reply to this email address if you
-want to know my name + address
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Let me know who you are and I'll point you to some surveys. 
I applaud your efforts and obviously agree with the sentiments.
Bobw
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AussieBrian
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Re: Proposal for a Global Cluster Headache Databas
« Reply #2 on: Sep 12th, 2005, 5:13am » |
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I'm all in favour of anything that improves our lot, but remain suspicious of all things statistical. According to the above, "67 percent are episodic while 13 percent are chronic only".
What are the other 20 percent?
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Bob P
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Re: Proposal for a Global Cluster Headache Databas
« Reply #3 on: Sep 12th, 2005, 8:56am » |
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http://www.clusterheadaches.org/survey/survey.htm
Doctors visiting the OUCH site have commented that this is the most useful info for them.
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| « Last Edit: Sep 12th, 2005, 8:56am by Bob P » |
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BobG
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Re: Proposal for a Global Cluster Headache Databas
« Reply #4 on: Sep 12th, 2005, 9:57am » |
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on Sep 12th, 2005, 1:13am, cluster wrote:Yours faithfully,
cluster@gmx.net
Please reply to this email address if you
-want to know my name + address
-need more information and/or
-would like to have this text in e.g. MS Word or PDF format
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You may havea good idea but, first a couple of questions.
Who are you? Why do we need to email you for this info? Why not just post it here? If we email you how do we know we not not start receiving a lot of junk, spam and sales pitches?
Why, with your first post here, without any information about who you are, are you posting this. profit?
Doubtful and cynical BobG.
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Pinkfloyd
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Re: Proposal for a Global Cluster Headache Databas
« Reply #5 on: Sep 12th, 2005, 10:40am » |
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on Sep 12th, 2005, 8:56am, Bob P wrote:
Is this data available to look at how each relate to each other and in different combinations or is it just a click and go form?
Take the 02 survey for example. Based upon the data shown, what flow rate is the most effective? Which mask? Does it work better while on, or off preventive meds?
If doctors find this useful, which flow rate/mask should they prescribe based upon the totals shown?
on Sep 12th, 2005, 8:56am, Bob P wrote:| [url]Doctors visiting the OUCH site have commented ... |
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Doctors? Is that 2 or 200? Did 2 out of 200 say it was useful or 198 out of 200?
Even "Crest" says "4 out of 5 dentists say...."
BobG....I agree
Bobw
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Margi
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Re: Proposal for a Global Cluster Headache Databas
« Reply #6 on: Sep 12th, 2005, 10:45am » |
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on Sep 12th, 2005, 9:57am, BobG wrote:
Who are you? Why do we need to email you for this info? Why not just post it here? If we email you how do we know we not not start receiving a lot of junk, spam and sales pitches?
Why, with your first post here, without any information about who you are, are you posting this. profit?
Doubtful and cynical BobG.
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BobG, I can vouch for this guy. He's on the up and up and honestly just trying to help. His post here is a copy of the original email sent to all the OUCH's and webmasters of the cluster sites. We (OUCH Canada) got ours a couple of weeks ago and I have since been in touch with him. He didn't get a response from the American entities, so I suggested he post it here on the ch.com board for feedback. His name is Friedrich. He's not a spammer, troll, or trying to gain profit in any way. He's just another sufferer trying to expand and streamline data and he has been in contact with Doctor Goadsby and a few others.
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seasonalboomer
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Re: Proposal for a Global Cluster Headache Databas
« Reply #7 on: Sep 12th, 2005, 10:59am » |
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A relational database does offer greater opportunities to "ask questions" of the data than a simple statistical results. However, wouldn't present data, if captured correctly, offer the opportunity to perform some of the cross-tabs necessary for some of these types of answers?
As for the value of such a tool, it will only be as valuable as the time put into it on the front end in designing the right questions and developing the list of questions that we want answered prior to completing the questionnaire. Your approach is correct here and I would gladly contribute to the effort. (I have some background in application of database information on decision making and database design).
One important aspect that deserves attention is attention to privacy related to this data.
Scott
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BobG
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Re: Proposal for a Global Cluster Headache Databas
« Reply #8 on: Sep 12th, 2005, 11:00pm » |
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on Sep 12th, 2005, 10:45am, Margi wrote:
BobG, I can vouch for this guy. He's on the up and up and honestly just trying to help. |
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Thanks Margi.
My apologies to Friedrich/cluster if my comments offended.
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sandie99
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Re: Proposal for a Global Cluster Headache Databas
« Reply #9 on: Sep 13th, 2005, 1:45am » |
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Hmmm.... I always knew I'm a ch freak. I've never smoked and I drink alcohol like twice a year... 
And I'm a chronic whose ch is finally in remission. 
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cluster
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Re: Proposal for a Global Cluster Headache Databas
« Reply #10 on: Sep 13th, 2005, 2:35am » |
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Hi BobG,
no reason for you to apologize.
I think I have to apologize for putting this proposal here without any further information about myself. Thank you Margi!
Hi Pinkfloydfan,
Thanks for your answer. You wrote:
"Well, because the above noted questionaire says things like only 8% of
those 12000 people list 02 as the best abortive treatment, but does not take
into account how many of those 12000 had even tried 02 as an abortive. So,
do only 8% of clusterers find 02 very effective or 90% of those that tried
it? If people see those stats (8%) they may not want to even bother. "
Exactly this problem is one of these things which I didn't understand
either. I transferred the data from the meds survey into Excel to do my own
"evaluation". - Check your email, I've sent you a copy.
Another wrong interpretation of the statistic is:
About 50% of the CH sufferers smoke, 50% don't, so what, smoking does not
have an effect, does it? - It does! How many of the US Americans smoke ? 5%?
If it is 5%, than the risk to get CH for a smoker is 10 times as high as if
you don't smoke? - Difficult subject, I could better explain this in the
German (my native) language. But I hope you know what I mean. I tried to
contact "The Webmaster" and DJ about this and other stuff, but got no reply yet.
When I heard about the Kyoto IHS convention I changed the plan and sent the proposal to the IHS+WHA, famous headache experts and support groups. Think big! - They are the experts, they should be leading such a global survey.
My target is that the world's leading headache experts discuss this proposal
during the IHC 2005 at Kyoto and hopefully, that such a database is being
developed. It will be a lot of work and spending money to create such a
database, but I am sure it will be worth the efforts.
Since 1999 I have cluster headaches. Fortunately, my CH only
seems to be a "light" version of CH compared to other patients. But earlier
this year it got worse and in July I eventually got the diagnosis “cluster
headaches”. My professional and academic background is in industrial
Production Planning and Manufacturing Systems Engineering. I have no
commercial interest with this cluster database proposal, I am not selling
database software.
The response on the CH Database proposal was quite good. Loads of spam but
also positive letters from the IHS and the "Cephalalgia" - at least they are
talking about it. No response from the USA yet, and that is why I put it on
the message board yesterday. If the US CH support groups and medical experts
don't support this, this thing will simply not happen.
Yes, please let me know more stats about cluster headaches!
Hi sandie99,
I do smoke to much and a high portion of CH sufferers does. Every CH seems to be different.
Perhaps CH has not just one reason and I don't think smoking is the reason, but it may contribute.
Regards,
Friedrich
Living in Cologne, Germany.
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AussieBrian
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Re: Proposal for a Global Cluster Headache Databas
« Reply #11 on: Sep 13th, 2005, 6:42am » |
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Well, I'm perfectly happy to support this bloke's intentions for a number of reasons:
1.) Margi says he's OK and that's good enough for me,
2.) He apologised for perhaps being a bit blunt in his original post,
3.) If his plan creates no good it will equally cause no harm, and,
4.) When I questioned his statistics he had the grace to PM me to say "You're right, and only ever trust the statistics you've faked yourself".
If it comes to a poll, I'm voting in favour.
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Pinkfloyd
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Re: Proposal for a Global Cluster Headache Databas
« Reply #12 on: Sep 13th, 2005, 12:59pm » |
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on Sep 13th, 2005, 2:35am, cluster wrote:
Hi Pinkfloydfan,
Exactly this problem is one of these things which I didn't understand
either. I transferred the data from the meds survey into Excel to do my own
"evaluation". - Check your email, I've sent you a copy.
- Difficult subject, I could better explain this in the
German (my native) language. But I hope you know what I mean. I tried to
contact "The Webmaster" and DJ about this and other stuff, but got no reply yet.
If the US CH support groups and medical experts
don't support this, this thing will simply not happen.
Yes, please let me know more stats about cluster headaches!
Regards,
Friedrich
Living in Cologne, Germany.
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Thank you Friedrich. I do have your email (hotmail put it into my trash bin so if you haven't heard from other people at hotmail addresses, you may want to try again with an email without attachments)
I will take a look at your spreadsheet and comment in email.
We'll be happy to help.
Bobw
P.S. You're english is fine, thank you.
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Kris_in_SJ
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Re: Proposal for a Global Cluster Headache Databas
« Reply #13 on: Sep 13th, 2005, 7:36pm » |
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Hi Cluster,
I'm all for it. I hope response is positive all around. I've been looking for common links for nearly 2 years on this board and find very few. A TRUE and indepth survey could help thousands of sufferers.
Kris
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Re: Proposal for a Global Cluster Headache Databas
« Reply #14 on: Sep 13th, 2005, 7:56pm » |
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Wie geht's, Friedrich auf Köln? 
I'm in. Lets get this stuff figured out! 
Namaste,
--Scott
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floridian
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Re: Proposal for a Global Cluster Headache Databas
« Reply #15 on: Sep 13th, 2005, 8:27pm » |
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It is a good idea, and there is (I think) a project designed to do much of this - CHATS. I don't know where they are at the present - not too long ago, they had a beta version. It was a web based system to track clusterheadache activity.
Anybody??
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| « Last Edit: Sep 13th, 2005, 8:49pm by floridian » |
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phydeaux
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Re: Proposal for a Global Cluster Headache Databas
« Reply #16 on: Sep 14th, 2005, 2:12am » |
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on Sep 13th, 2005, 8:27pm, floridian wrote:It is a good idea, and there is (I think) a project designed to do much of this - CHATS. I don't know where they are at the present - not too long ago, they had a beta version. It was a web based system to track clusterheadache activity.
Anybody?? |
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I would be WAY intrested in any kind of online/searchable/relational database/info site. Heck, I'd volunteer time for it, bandwidth, even servers! I've been chasing data online, and so much is contradictory, difficult to get at or understand, or just plain false!
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cluster
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Re: Proposal for a Global Cluster Headache Databas
« Reply #17 on: Sep 14th, 2005, 4:28pm » |
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Of course: Privacy + data integrity must be included in the "final database specification". (I should have put it into the draft in the first place!)
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cluster
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Update on Global Cluster Headache Database
« Reply #18 on: Sep 16th, 2005, 1:23am » |
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We received an answer from the European Headache Foundation (EHF):
"Thank you for your e-mail. I will forward your proposal with the EHF Executive Board and the President of the EHF.
EHF will discuss this subject during the IHS congress in Kyoto with the representatives of the IHS."
(The IHS is the International Headache Society).
YYYYYYYYYYYYEEEEEEEEEEEEEEESSSSSSSSSSSSS !!!!
"floridian" put a PDF of the database proposal on his web page:
http://www.med-owl.com/clusterheadaches/
Thank you very much Jonathan!
Next steps:
- Look at available statistics
Please post any information, links or articles you know about CH or related statistics here or sent me an email!
- Find out more about CHATS - Jonathan will put some information on his website
- Define and discuss ideas on how such a database could be structured to ensure privacy, data integrity and to allow for capturing change over time. Has anybody got a proposal?
Regards,
Friedrich
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| « Last Edit: Oct 14th, 2005, 6:23am by cluster » |
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magman
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Re: Proposal for a Global Cluster Headache Databas
« Reply #19 on: Sep 16th, 2005, 5:31am » |
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A system has already been designed, developed and tested…..CHATS.
CHATS had been available for beta testing when relocation necessitated an ISP change that drastically limited the connectivity/data-transfer.
The original idea was to make this information available to Doctors, hospitals, researchers world-wide. However, conversations with US physicians over the last 6 months have shown that, as a medical professional, they could not consider nor act on data culled from an Internet database. Reasons sited for non-use included such items as: no assurance of CH diagnoses; bogus data entered maliciously; system not scientifically tested/certified.
Given the professional response and my own lack of interest in CH topics after my last cycle, the CHATS project stalled out over the last 5 or 6 months. This thread appears to show interest and a need. To that end, we will install CHATS on a US server serviced by a T1 Internet connection. System availability/testing is expected within the next 3 or 4 weeks.
Peace,
-magman
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cluster
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Re: Proposal for a Global Cluster Headache Databas
« Reply #20 on: Sep 16th, 2005, 5:56am » |
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on Sep 16th, 2005, 5:31am, magman wrote:A system has already been designed, developed and tested…..CHATS.
The original idea was to make this information available to Doctors, hospitals, researchers world-wide. However, conversations with US physicians over the last 6 months have shown that, as a medical professional, they could not consider nor act on data culled from an Internet database. Reasons sited for non-use included such items as: no assurance of CH diagnoses; bogus data entered maliciously; system not scientifically tested/certified.
Peace,
-magman
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... and that is the reason why we need to get the scientists themselves involved, ensure CH diagnosis, ensure correct data, ensure privacy. I don't think such a database will find the cure or the reason for CH. But it will take us at least two steps further. The database will be a source of information for the patient, but results and conclusions will have to be deducted by the scientists and will have to be further evaluated by clinic studies.
Thank you, good to know that CHATS exists!
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cluster
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Re: Proposal for a Global Cluster Headache Databas
« Reply #22 on: Oct 2nd, 2005, 4:13pm » |
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Hi magman,
your email address ouchpresident@kdlltd.com
does not work.
Could you please sent me some more information on CHATS.
I have checked + searched what I could find on CH.com message board and I found the (dead) CHATS login page.
Perhaps you can send some screen dumps or whatever is available.
Thanks in advance!
Pain free times,
Friedrich
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