Thank you for taking the time to participate in this survey.
There is a tremendous amount of anecdotal data available regarding PMR, but apparently very little systemic data collection to categorize various aspects of the disease.
Almost every article describing PMR says the same thing:
The purpose of this survey is to collect a standard set of information regarding PMR patients that could be used as a starting point for people who are new to the disease.
The survey is simple and should only take about 15 minutes or less to complete.
When all answers are completed, simply click the Submit button at the bottom of the page.
Please be assured that your responses will be completely anonymous.
NOTE: IF YOU HAVE ALREADY RESPONDED TO THIS SURVEY, PLEASE DO NOT RESPOND AGAIN AS THIS MAY INVALIDATE THE DATA.
If you make an error while filling in the form, go back and change it or simply close the document rather submit the response on more than one occasion.
To repeat, only click on the Submit button when you have finished the survey.
SEEING THE RESULTS
When a sufficient number of responses have been received, a variety of reports will be generated from these responses.
These reports will be available for anyone to view at the following location:
REQUESTING RAW SURVEY DATA
In addition to the available on-line reports mentioned above, we will also make available the survey response data in "raw" format, i.e. exactly as entered by the survey responders.
This format will consist of either 1 or 3 csv (comma separated values) files.
The reason for the csv is that this is a well known export format that many applications (spreadsheets, databases, etc.) can import.
The reason for 3 files is that Microsoft Excel, until quite recently had a limit of 256 columns.
The results are exported with one row for each response and one column for each question (each checkbox is a separate question).
The survey therefore has 327 separate questions, exceeding Microsoft Excel's limit for most older versions.
The results are split up as follows:
The first column in each file is a response identifier, which will make it easier to link responses from each of the three files.
The second column is the response date.
The responses are in the order of when they were submitted.
The remaining columns are the actual result values.
If you have the ability to process zip files, the csv file(s) will sent in a single zip file as an email attachment.
Please be aware that we have been receiving occasional multiple responses from the same individual, sometimes separated by weeks or more in time.
When we encounter an obvious repeat, we try our best to combine the responses into one response, and delete the others.
The implication of this approach is that as the raw data files are produced over time, the data in the latest result files may have different information from previous result files for prior responses that have been updated by a newer response.
We believe it is better to combine responses than to simply discard either the earlier or later one.
To request the survey data, click on the link below and fill in the information requested in the body of the email: