INTERNATIONAL SURVEY. Date commenced August 2008.

[jinasc]

I have noticed lately there are quite a number of postings re 'why t has PMR< GCA come along and what has caused it.

So I thought some of you might just be interested in filling in this survey.

(quantisurve.com/cgi-bin/pmr...

Extract from the initial press release, in August 2008.

Five women’s hunt for information unearthed an expert, Professor Bhaskar Dasgupta of Southend University Hospital; and the need for a national organisation and this led to the following:

A) "Patients from the UK & USA have collaborated to devise and launch a Global Online Survey, which will provide data, free of charge, to Patients, Researchers and Medics.

It could be the biggest online survey (quantisurve.com/cgi-bin/pmr... of its kind ever and may help reveal the cause(s) of two debilitating, life changing illnesses. which will provide data, free of charge, to other patients, researchers and doctors alike.

It could be the biggest online survey of its kind ever and it might help reveal the causes of these mysterious illnesses – and lead to a cure”

People with PMR and GCA are urged to visit the site quantisurve.com/cgi-bin/pmr... and fill in the survey."

[PMRpro Ambassador]

Out of interest - does Sarah Mackie know about this?

[jinasc in reply to PMRpro]

Probably not, as I did not meet Sarah till after she had a her child. I did talk to her about some research she was running about GCA at the time, as Jean Miller had asked me to join in the research as a patient.

[DorsetLady PMRGCAuk volunteer]

Hi,

Is this till open? I did complete it a long time ago..

Just for info, the first 2 links don't work, however 3rd one does - replicated here -

quantisurve.com/cgi-bin/pmr...

..and this is a report following replies dated April 2021 -

quantisurve.com/pmr/reports...

[jinasc]

Thank you for this information, I did lose touch with Elliot the gentleman who ran his company and decided as he had GCA and PMR he would run this survey free of charge. It was sheer luck we came across him - I forget how he found us pmr fighters5.

Must look for an original link. In case it has run down. I do know that a researcher in the Mayo clinic, according to Elliot was very interested. Mind it is more than 3 years since we were in contact.

[AyJayBass]

I had done this before but I don't recall where I saw the link. I presume it was here?

[DorsetLady PMRGCAuk volunteer in reply to AyJayBass]

More than likely …..