Research studies seeking participants with 'moderate' or 'severe' lupus

[Paul_Howard]

***Applications are now closed for these studies as they have recruited the required number of participants. Thank you to everybody that enquired.***

We’ve been approached by researchers who are looking to speak to men and women who suffer from different health problems and who would be willing to participate in a market research study on this topic. The purpose of this study is for marketing research and any contributions will be held in confidence.

The researchers are hoping to recruit four patients who consider themselves to experience ‘moderate’ lupus for a mini group. Participants will be required to attend this group on Friday 6th March in Hammersmith for a session lasting approximately 90 minutes and they will receive £160.

The researchers are also hoping to recruit two participants who consider themselves to experience ‘severe’ lupus for a web assisted telephone interview on Thursday 19th March lasting approximately 75 minutes and they will receive £120.

In addition for each person that takes participates, LUPUS UK will receive a £25 referral fee.

If you are interested in taking part, please email Sue Morrison at [e-mail] or call 07932 997432.

[MandaM]

Could be interested but unsure if I qualify for moderate lupus?? I have a kidney transplant, get scleritis, have blood pressure problems, unsolved cardiac and respiratory problems, gastro problem undiagnosed, joint pains, chronic fatigue, asthma, eczema, rashes at times. I do work through all this no matter how bad a day, and I would have to know quickly if I'm of interest as I will be planning to fill the clinics I run in next few days which will include March 6th.

[Paul_Howard Partner LUPUS UK in reply to MandaM]

Hi MandaM,

The researchers provided no specifics on what they classify as 'moderate' or 'severe' lupus. They suggested that either the patient's doctor would have described it as one of these, or the patient themselves would consider themselves as one. The best thing is to email them or call them, they will be the ones to judge.

[MandaM in reply to Paul_Howard]

Thanks Paul I contacted Sue last Friday who said she would call me today Monday. No call as yet!

[MandaM in reply to MandaM]

Promised call in morning hasn't come!

[Paul_Howard Partner LUPUS UK in reply to MandaM]

Hi Manda,

I've just heard from Sue and apparently they received an overwhelming response and have filled the places for the study. As such, they haven't contacted everybody back, but they intend to keep hold of your email for a little while in case somebody drops out of the study or if they have another opportunity crop up in the near future.

[MandaM in reply to Paul_Howard]

Ok thanks Paul.

[tennissenior]

Dear Paul,

In the U.S., Lupus researchers wanted to do a live interview. I told them that I live in Florida and it would have to be on the telephone. I then offered to send them an article I wrote, explaining what Lupus actually IS because the majority of people we speak to haven't got a clue! They said they would use part of my article. However, there was no mention of monetary value - just input. My opinion is that rather than the Lupus Foundation send me numerous emails, asking ME for donations (I am a victim!), educate people! Let them know what Lupus is and how we feel and what we endure every day of our lives.

[Paul_Howard Partner LUPUS UK in reply to tennissenior]

Hi tennissenior,

It's great that the researchers in the US wanted to use some of your article. Not all researchers offer a financial reward to participants, but this particular study does.

We do our best to raise awareness of lupus to the public and improve their understanding of how the condition affects people.

[tennissenior]

I write well and my article has opened many eyes and minds as to understanding how Lupus changes one's life. It's been published in many local newsletters in my area, and many of my own friends now understand why I am sometimes a "different person." It affects my motor skills, my memory skills, and my skin. Less and less, I have to explain why I have a lesion on my face (Scleroderma), or why I have to keep using eye drops (Sjogren's). I think it's time to spread awareness instead of constantly asking for donations for a disease that is so misunderstood.

[Dimpled1]

? Mild or moderate lupus? That's a like saying you are a 'bit pregnant'

Or a mild toothache.

Lupus is as cruel as it always has been, and what might seem a mild attack to some, a person with the same symptoms might be decimated. Each individual is just that, and will re act differently to flares or every day living with Lupus.

Dimple