@axolotl, can this data be made freely available to allow other members of the community (or potentially other communities such as those with a penchant for data analysis) to analyse it themselves? May be cheaper than paying somebody and potentially faster than waiting for a single person who may be too unwell or preoccupied to fulfil the role.
hey @orthogs,
The raw data? No - If thereās a patient with SQL skills that could help to process the data, I would encourage them to message a staff member to discuss helping out, as weāve requested before. Thereās many reasons, but the main ones are: The data is not in a naturally workable form: āanswer codesā from matrices etc wonāt make head or tail of sense without knowing the backend design of the survey, and results from validated surveys need to be processed segment by segment in line with their individual scoring instructions before analysis. Secondly, thereās no informed consent to open the data that way even if this was a technical possibility.
can I find out the statistics on serotonergic drugs (based on the number of reports of the various molecules)?
Once upon a time, it was strongly encouraged to take the post drug syndrome survey, but nowadays not much, if any, mention of it at all. Did the scientists say no more were needed? Did people get burned out on encouraging it? I actually did the survey before I started posting.
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We have more than enough data for what we need right now. The survey has proved very useful but itās not necessary to keep gathering huge amounts of data.
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Hi @infinite, we havenāt released any of the findings publicly yet as weāve been preoccupied with organising upcoming research and other projects. The survey data has been very useful for informing researchers of the complete clinical picture but at this stage we havenāt had a chance to put it in a digestible form for patients and the public.
@infinite, if it is the old charts and such that you are referring to, there is/was an apparent tech issue that lead to the graphics linked to the data becoming broken/unavailable last year. Since the site migration, it may take quite a bit of work to rebuild the infrastructure to the point of having this feature available again.
As @Sugarhouse has indicated, we havenāt really invested much into the survey recently now that it has been closed to participation and focus has shifted to the Kiel research
But if it was a survey taken my the public, why canāt they see what you gave researchers?
I agree it would be nice if the public could see anonymous aggregate data of the form that might have been provided to researchers in the past.
However, as axolotl already wrote, if reports of that kind are not readily available it would take someone with strong data analysis skills to create new ones. Such a person would also need to be trustworthy as I imagine the SQL database includes the respondentsā personal contact information.
Is everybody here donating monthly to pfs network ? Their research progressing. People should atelast donate 100-200 dollar a month. We have to gather more pfs victims and make donations. If we have 200 People donating 100 dollar a month we can fund new research every year
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Would you like to join our fundraising group on whats app?
I donate monthly between 200-500 dollars. Sometimes more. What we have to do is. Connect atleast 100 200 more pfs patients and make everyone donate 100 dollar a month atleast.
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