Share your experiences of lupus in a research study - LUPUS UK

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Share your experiences of lupus in a research study

Paul_Howard profile image
Paul_HowardPartnerLUPUS UK
7 Replies

Researchers at Duke University in the United States are seeking a diverse group of individuals to interview about their experiences of living with systemic lupus erythematosus (SLE). Please complete their screening survey to show your interest in taking part.

What are you asked to do?

You are asked to complete a screening questionnaire. Researchers will use answers to the screening questionnaire to identify individuals to contact for follow-up interviews.

If you complete the screening questionnaire, you can enter your name into a raffle to win one of five gift cards.

If you are selected for an interview, you will be asked to take part in two telephone interviews. Each interview will last about 1 to 1.5 hours. The interviews will be with a trained interviewer from Duke University.

You will be compensated for your time for each interview. You will receive a bonus if you complete both interviews.

What does the screening questionnaire ask?

The screening questionnaire asks questions about you—such as your age, race, and education. It also asks you questions about your lupus—such as your symptoms and type of treatment.

What are the interview topics?

If you are selected for an interview, you will be asked to describe how having lupus impacts your day-to-day life. You will also be asked about your medical information needs and to give feedback on educational materials on lupus.

Who is funding this study?

UCB, a global biopharmaceutical company, is funding this study. UCB will use the information learned to improve their patient-focused procedures.

To participate, you must:

– Be at least 18 years old.

– Be able to speak English.

– Be diagnosed by a health care provider with having systemic lupus erythematosus (SLE).

– Have access to a computer and a reliable internet connection.

You cannot take part if you:

– Do not have systemic lupus erythematosus (SLE) but a different kind of lupus.

– Are a caregiver of an individual with lupus.

– Are an advocate for patients with lupus.

Where is it?

You can participate from home. To complete the screening questionnaire, all you need is a computer and a reliable internet connection. To participate in the interviews, all you need is access to a telephone.

When would the screening questionnaire and interview be done?

The screening questionnaire can be completed at your own convenience within two weeks of the release date (4th December 2019). If you are selected for an interview, it will be scheduled at a time convenient for you.

If you are interested in this study, click the link and you will be directed to the screening questionnaire - redcap.duke.edu/redcap/surv...

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Paul_Howard
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7 Replies
Barnclown profile image
Barnclown

👍Thanks Paul: just completed the screening questionnaire❤️🍀

Paul_Howard profile image
Paul_HowardPartnerLUPUS UK in reply to Barnclown

Thank you :) Good luck in the prize draw too!

Barnclown profile image
Barnclown in reply to Paul_Howard

😃🤞👍

Cal66 profile image
Cal66

Thanks Paul, I have completed the survey, anything to help with lupus & hopefully 1 day find a cure

Paul_Howard profile image
Paul_HowardPartnerLUPUS UK in reply to Cal66

Thank you Cal66 . Good luck in the prize draw!

tashi profile image
tashi

Just completed screening questions, always willing to help with research studies. Thanks Paul 👍

Paul_Howard profile image
Paul_HowardPartnerLUPUS UK in reply to tashi

Thank you tashi . Good luck in the prize draw!

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