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Sjogren's Syndrome Support

An opportunity for our members in the UK and Germany


#1

Did you know there are over 40 support communities under the Ben’s Friends umbrella? It’s not hard to understand, then, why we get a lot of requests to use our members as sources of information for all kinds of projects and studies. As a rule, we just say no to these requests: our members don’t need the “noise” of graduate students, researchers or marketers on their community.

Once in a while, though, someone approaches us with an opportunity that sounds really interesting. If there’s an immediate and tangible reward for our members, without too much disruption on the community, we’ll consider it. And we did with this one.

Let me introduce Emily from the UK. If you’d like to know a bit more about her, click on this @tag to see her profile: @Emily_from_Medicys

If you get a chance, please let us know what you think about opportunities like these. Email us at modsupport[at]bensfriends.org. (replace [at] with @)

Seenie and TJ from Moderator Support, and Ben Munoz

Over to you, Emily …

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Hello Everyone

We are looking for patients in the UK who have been diagnosed with Sjogren’s to participate in the following interview:

  • Topic: Experience living with Sjogren’s Syndrome
  • Length of interview: 60 minutes
  • Type of interview: Web assisted telephone interview (you will need to view some materials via screenshare during the interview)
  • Dates: 26th -30th November
  • Honorarium: £40 (in the form of a cheque, DBP of Gift Card (M&S or Amazon)

In Germany we also have a second study which I have included below for you:

  • Subject: To discuss your experience living with Sjogren’s Syndrome
  • Type of study: Series of approx. 3 exercises that ask you to reflect on your personal story and thoughts and feelings of living with Sjogren’s Syndrome by using an online web platform
  • Duration: 30 minutes per day over 4 days (120 minutes in total)
  • Date: November dates TBC
  • Honorarium: € 120

I do have a few short screening questions I would need to run through with anyone interested first to check they are the right person to talk to but I can do this via email or phone.

Are you interested in participating? Click on @Emily_from_Medicys and then on the blue “Message” button.

Emily @Emily_from_Medicys


#2

#3

People who are interested can post on this thread or click on this:
@Emily_from_Medicys
and then on [Message]. Either way, our system will send a message to her email.

If you would like to share your email address with her, please replace the “@” in your address by [at]. Our system is set to block all email addresses: replacing the @ bypasses the system and prevents scammers and spammers from automatically “harvesting” your email address for their evil purposes.

Seenie from ModSupport