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In September 2004, we sent the questionnaires to 703 adult mastocytosis patients that had been identified by AFIRMM in France between 1999 and 2004.
Patients were sent the questionnaires and an informed consent form via mail.
KK sent the questionnaires to participated directors, performed the statistical analysis and wrote the manuscript.
The patients, recruited through Macmillan Cancer Support, were first sent the questionnaires.
We sent the questionnaires for the first round and a reminder in February respectively March 2005.
The cooperating practices (SC and CAU) sent the questionnaires to the patients in 2006.
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After the internal test, we sent the questionnaire to one university.
122 patients with JME were identified from our database and were sent the questionnaire.
Results: Responses were received from 652 of the 687 patients (response rate, 95%) who were sent the questionnaire.
Thirty-one advertisers (37%) agreed to be sent the questionnaire and 28 were completed and returned (33%).
Responses were received from 101 of the 147 patients (response rate, 68.7%) who were sent the questionnaire.
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