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Title: CH Database Part 3-1 Post by cluster on Oct 1st, 2005, 5:25am Global Cluster Headache Database Some ideas on how this could be made to work The details of the Global Cluster Headache Database should be defined by the International Headache Society (IHS working group). The proposal for such a database deliberately did not include much detail about what such a database’s design and about what the survey questionnaires etc. could look like. All the details should be defined by a team of scientific experts and members of the CH support groups, not by a single person. See the following link for the original proposal: http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=chspecific;action=display;num=1126505637 But nevertheless, when such a competent team of scientific medical and support group cluster headache experts, statistics experts, survey experts, database experts …. come together to work out the details, they should not start with a blank sheet of paper, but with an existing proposal to be worked on. Here are just some ideas and please see the original proposal also. Data Collection: - Patients should see their physician or neurologist to get a ‘survey prescription’: The doctor’s stamp and signature on a piece of paper. This is to ensure that the patient’s CH diagnosis is certified by a doctor. Just a piece of paper with the certification that ‘the person’ suffers from cluster headaches. This would also avoid people entering data with a purpose other than to contribute real patient’s data. This ‘survey prescription paper’ could already include a simple or a detailed paper questionnaire. The patient would be asked, if she/he prefers to enter her/his data by internet, paper questionnaire, telephone or personal interview. Ideally the interview would be carried out by the doctor asking the patient. Positive side effect: By conducting such an interview the doctor would learn more about her/his patient and cluster headaches in general and so would the patient. - The ‘survey prescription paper’ would have to be sent to a central national contact address. The patient would then depending on her/his choices receive either an email with user ID + password to login to a web based survey or a paper questionnaire or a phone call interview or a personal interview visit. - The patient should give a contact address. This would enable future surveys based on the first database’s results and would allow further questions and clarifications, if required. Such a contact address could be the patient’s full name and postal address, just the person’s phone number or an (anonymous) email address. Any form of such a contact address would allow the database to work with ‘change over time’ using future surveys to find out if things have changed or to e.g. evaluate new treatments. - The first part of the global CH relational database would then be a patient contact – patient code number database. This part of the database would be strictly confidential, controlled by the national government’s privacy and data security authorities. Therefore this part or better these parts of the database should be on a national basis. - The main part of the Global Cluster Headache Database would then be the anonymous patient’s code number with the related individual data as acquired through the questionnaires: - Sufferers personal profiles e.g. age, gender, etc. - Check for IHS Headache Classification Criteria - Medication + helpers and their effectiveness - Triggers – What triggers episodes and/or attacks? Continued in CH Database Part 3-2 More to follow, Friedrich |
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Title: Re: CH Database Part 3-1 Post by cluster on Oct 1st, 2005, 6:28am 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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