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Title: CH Database Part 3-2 Post by cluster on Oct 1st, 2005, 5:27am Global Cluster Headache Database Some ideas on how this could be made to work * continued from part 3-1 * - Within the questionnaires each ‘chapter’ of questions should also have a field to allow the patient to enter some free text for comments and additional information. Regarding triggers for example, I am sure there will be some news about triggers not commonly known yet. - The first data collection should happen over a defined period of time, perhaps over a year or two. One important data field is the date the data was collected …. Well, if I continue to explain why all this is necessary, this posting will get endless. - ‘Sample Size’: As many patients as possible. Ideally 100% to enable descriptive statistics. I don’t think it is possible yet to work statistically on cluster headaches using representative statistics. - Finally, there will hopefully be a lot of patient’s data in the database. The evaluation itself is a peace of cake for database and statistics experts. The doctors would have defined their questions to be answered by the database together with the development of the questionnaires. Also linear regression analysis should be used to test relations between continuous variables. Fictitious example: Perhaps we will find out that treatment ‘X’ only works for blue eyed patients. Perhaps we will find out that there is no relation between anything at all. But this would also be a result, an advance in knowledge we haven’t got yet. Next steps then (some years later): The more you know, the more questions you will have! – Global Cluster Headache Database second round: Develop new questionnaires based on the questions which arose from the first survey, include new knowledge and treatments. As Floridian wrote: “Privacy is one big consideration. Another is capturing change over time - maybe some treatment works for someone, then they report it is great, and later, it stops working - it is tricky to capture that type of phenomena.” My first reaction was: Lets do one step after the other – but Floridian is right, the database will have to be designed to handle change over time. I think, this is enough for today. There is much more to tell about it. More to follow, Friedrich |
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Title: Re: CH Database Part 3-2 Post by AussieBrian on Oct 1st, 2005, 6:22am Well you've certainly gone to alot of effort here, Cluster, and I can see only good from it. I understand barely a word of what you've written so far but if I can be of any help from the the Australian standpoint then feel free to contact me anytime. Kindest regards, Brian. |
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Title: Re: CH Database Part 3-2 Post by cluster on Oct 1st, 2005, 6:26am Global Cluster Headache Database Overview of CH.com message board postings - I had to split the postings because the text was to long - Proposal for a Global Cluster Headache Database http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=chspecific;action=display;num=1126505637 Part 2: Some Available Cluster Headache Statistics and Surveys Part 2-1 Scientific surveys, statistics and literature http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=chspecific;action=display;num=1128161475 Part 2-2 Non scientific surveys, statistics and databases http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=chspecific;action=display;num=1128161636 Part 3: Some ideas on how this could be made to work Part 3-1 http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=chspecific;action=display;num=1128162323 Part 3-2 http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=chspecific;action=display;num=1128162464 Pain free times, Friedrich |
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