National Amyloidosis Centre Patient Forum

Amyloidosis => Research => Topic started by: Miriam Vered on December 04, 2018, 12:09:52 pm

Title: market research volunteers - amyloid cardiomyopathy
Post by: Miriam Vered on December 04, 2018, 12:09:52 pm

I've been contacted by a market research agency seeking volunteers with amyloid cardiomyopathy.


Please note that this is not connected to the NAC.


I’m writing on behalf of Liberating Research, a market research agency set up 3 years ago by a multiple sclerosis patient, giving people the opportunity to share their experiences of the chronic conditions they live with, the treatments they receive, as well as give feedback on what improvements could be made to health services.  I am contacting you as it looks like you head up a few support groups for patients.

Our client has been commissioned by a pharmaceutical company to carry out a study which seeks to explore the patient journey (feelings, fears, hopes, experience, etc.) before, during and after diagnosis of amyloid cardiomyopathy.

The results will be presented to the pharmaceutical company in an aggregated and anonymous format and used to help the company to gain a better understanding of the condition from the patient and caregiver perspective. 

We would like to offer a donation to a healthcare support group of your choice for any help in connecting us with these patients.

What the research involves for Patients:
  The research will take place using a 60-minute one-to-one discussion with patients with amyloid cardiomyopathy . 

• In these discussions, we will explore the journey from the very first symptoms experienced, to diagnosis of amyloid cardiomyopathy and up to today.
• Discussions will take place via a telephone interview
• All interviews will be audio recorded .The audio recording will be used for analysis purposes only.
• Those patients who agree to take part will receive an honorarium for their time ( £100, with 10% of this going to your group or support group of the patients choice that helps patients with this condition)
• Please be assured that your legal and ethical rights as a market research respondent will be protected, including your right to withdraw from the process at any time.
• The research will observe and comply with all appropriate guidelines including those of ESOMAR, British Healthcare Business Intelligence Association (BHBIA) and the European Pharmaceutical Marketing Research Association (EphMRA).

Tamara Burke
Account Director
Liberating Research

If you are interested in participating - click here:
https://www.liberatingsurveys.com/en/enquire/202/orgchcfam (https://www.liberatingsurveys.com/en/enquire/202/orgchcfam)

Title: Re: market research volunteers - amyloid cardiomyopathy
Post by: antonydeB on December 10, 2018, 06:54:29 pm

What exactly do you mean by "[amyloid cardiomyopathy"' ?

Title: Re: market research volunteers - amyloid cardiomyopathy
Post by: Miriam Vered on December 10, 2018, 07:18:17 pm

Amyloid affecting the heart

Title: Re: market research volunteers - amyloid cardiomyopathy
Post by: antonydeB on December 10, 2018, 08:15:55 pm

That is what I thought, but certain drug companies seem unable to .

Title: Re: market research volunteers - amyloid cardiomyopathy
Post by: Vic on October 24, 2019, 04:08:13 am

Just making an enquiry if this study is still open? Also I from Sydney Australia.
Thanks
Cheers
Vic

Title: Re: market research volunteers - amyloid cardiomyopathy
Post by: Miriam Vered on October 24, 2019, 03:13:18 pm

Hi Vic,
According to the information at the link it seems to be only for patients in the UK.