Kidney transplant patients

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Kidney transplant patients

Postby EF123 » Tue Aug 08, 2017 9:39 am

We are currently conducting a research on kidney transplants that have failed or are starting to fail. We are looking for 8-10 volunteers to take part in an anonymous online group taking up no more than 2 hours of your time over a 4 week period and you'd receive £100. The research is all about your day to day lives, the medication you take and the key challenges you face.

If this is something you would be interested in please follow the link to our secure questionnaire -https://www.surveymonkey.co.uk/r/5933ZRB

I look forward to hearing from you
Kind Regards
Bex
EF123
 
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Location: Bollington

Re: Kidney transplant patients

Postby rheaybou » Wed Aug 09, 2017 2:35 pm

Do you have any additional information on who you represent? Where the information you collect will be used?

are you affiliated to a hospital/research group? I am all for helping others with information.......but only when I know how it will be used....not just offered money.
Now 35 with Alports and I had my first kidney-versary 18th feb 2013....I hope to have many more.

My living donor and his family are doing all well.

==
34 year old with Alports.

Living donor transplant take two 18/02/2013.....
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Re: Kidney transplant patients

Postby Chris Wright » Wed Aug 09, 2017 9:44 pm

rheaybou wrote:Do you have any additional information on who you represent? Where the information you collect will be used?

are you affiliated to a hospital/research group? I am all for helping others with information.......but only when I know how it will be used....not just offered money.



Agreed
Transplanted Sept 1981

Still enjoying life like a 21 year old, or younger!
Chris Wright
 
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Re: Kidney transplant patients

Postby JMan » Sat Aug 12, 2017 4:34 pm

EF123 wrote:We are currently conducting a research on kidney transplants that have failed or are starting to fail. We are looking for 8-10 volunteers to take part in an anonymous online group taking up no more than 2 hours of your time over a 4 week period and you'd receive £100. The research is all about your day to day lives, the medication you take and the key challenges you face.

If this is something you would be interested in please follow the link to our secure questionnaire -https://www.surveymonkey.co.uk/r/5933ZRB

I look forward to hearing from you
Kind Regards
Bex



@EF123 You posted the same post a few days ago.

Please give some background on the survey and it purpose and usage
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Re: Kidney transplant patients

Postby EF123 » Tue Aug 15, 2017 10:17 am

Hi,
Thank you for your comments.

I am writing this on behalf of Exafield - a medical fieldwork agency http://www.exafield.com/presentation. We are hired to recruit patients to take part in medical research. The data you provide through the survey will be kept secured and not shared with any third party. I can then give you a call to ask a few additional questions to make sure you are suited for this particular study, again this is strictly confidential and is just to get a better understanding of your symptoms and diagnosis. During the research you will be anonymous, it will be a relaxed enviornment and a nice way to share your views with people in a similar position.

The research will be used to educate healthcare professionals on what it is like living with Chronic Allograft Nephropathy - which medication you take (any side effects, is it helpful) how you feel day to day and problems you face.

I hope this has helped.
EF123
 
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Location: Bollington

Re: Kidney transplant patients

Postby rheaybou » Wed Aug 16, 2017 12:17 pm

So no links to a hospital etc.

What would worry me is that you; don't have links to a hospital or research group and that a quick check on companies house has it as two offices. How do I know my information would be safe/not shared/sold outside of the UK?

I would advise people to view this with caution.
Now 35 with Alports and I had my first kidney-versary 18th feb 2013....I hope to have many more.

My living donor and his family are doing all well.

==
34 year old with Alports.

Living donor transplant take two 18/02/2013.....
rheaybou
 
Posts: 1353
Joined: Mon Nov 14, 2011 11:04 am
Location: Doncaster

Re: Kidney transplant patients

Postby EF123 » Wed Aug 16, 2017 3:16 pm

The market research is strictly non promotional and the feedback we gain will be used to support the development of a potential future treatment to be used post kidney transplant.

We adhere to the Codes of Conduct and data protection law set out by the UK professional market research bodies (MRS and BHBIA) and also global organizations (ESOMAR, PBIRG and PMRG). You can always check with the BHBIA if you have any doubt: https://www.bhbia.org.uk/home.aspx

We also have some lovely reviews from people who have taken part in our research before - https://www.facebook.com/pg/exafielduk/ ... e_internal

We are not working with a particular hospital on this project we are working with www.simpsoncarpenter.com


Again I hope this helps clear up any doubt.
Bex
EF123
 
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Re: Kidney transplant patients

Postby JMan » Sat Aug 26, 2017 5:19 pm

Possibly, your first post was titled medical research, but your working with a market research firm, which presumably means your contracted by someone either medical or commercial?
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Re: Kidney transplant patients

Postby EF123 » Wed Aug 30, 2017 10:46 am

We are working for Simon and Carpenter who are employed by a medical company for this research.

We are on a very tight deadline with the research starting next Tuesday and struggling to find people with Chronic Allograft Nephropathy. If anyone matches the description and would be interested please email myself - rebekahbowman@live.co.uk and I'd be happy to chat about any queries or alternatively you can sign up through https://www.surveymonkey.co.uk/r/5933ZRB if you're comfortable giving us your details or you can speak to us through our Facebook page - https://www.facebook.com/exafielduk/ whatever makes you most comfortable.

The results of the study are for research purposes only and your details will remain secure. If you would like to take part I hope to hear from you.
EF123
 
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Location: Bollington

Re: Kidney transplant patients

Postby Chris Wright » Wed Aug 30, 2017 8:12 pm

EF123,

Why not use your real name and state your background and purpose?

I assume you have nothing to hide.

I always use my real name as i don't. And i'm not even asking for something.

Chris
Transplanted Sept 1981

Still enjoying life like a 21 year old, or younger!
Chris Wright
 
Posts: 96
Joined: Sun Nov 19, 2006 9:21 pm

Re: Kidney transplant patients

Postby EF123 » Fri Sep 01, 2017 9:59 am

I have given our website and company name throughout these messages and stated the purpose of what the research is about.

We aren't trying to trick anyone, we are only looking for people to take part in a medical market research study on the subject of Chronic Allograft Nephropathy, to get their views and offer the opportunity to chat with other people in a similar position (a bit like these forums). I understand being weary of giving out details and I said in a previous message you can contact the British Healthcare Business Intelligence Association https://www.bhbia.org.uk/aboutthebhbia/overview.aspx to confirm who we are and that we abide by their rules - https://www.bhbia.org.uk/enquiries.aspx

I have also provided our Facebook page so people can see the reviews from people who have taken part in our research before: https://www.facebook.com/pg/exafielduk/ ... e_internal

I am sorry if these messages have upset anyone or caused offence,

I hope everyone has a lovely weekend
Kind Regards
Bex
EF123
 
Posts: 5
Joined: Fri Jul 28, 2017 8:16 am
Location: Bollington


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