Thank you for your interest in completing this screening questionnaire. Before we begin, here are some answers to some questions you might have about the screening questionnaire.

What is the purpose of the screening questionnaire?

The purpose of the screening questionnaire is to identify people to take part in two follow-up telephone interviews. We (researchers at Duke University in the United States) want to interview a diverse group of individuals with lupus. We will use the information from this screening questionnaire to identify who to interview. You may or may not be selected for an interview. You will be contacted if you are selected for an interview.

If you complete the screening questionnaire, you can enter your name into a raffle to win one of five £100 gift cards. If you are selected for the interviews, you will be compensated for each interview with a bonus for completing both interviews—for a total of £150.

How long will the screening questionnaire take to complete?

About 10 minutes.

Who can complete the screening questionnaire?

People can complete the screening questionnaire if they:

  • Are aged 18 years old or older.
  • Self-report as having been diagnosed with systemic lupus erythematosus by a health care provider.
  • Live in the United Kingdom.

Please do not complete the screening questionnaire if you are under 18 years of age, have not be diagnosed with systemic lupus erythematosus by a health care provider, or live outside of the United Kingdom.

Also, please do not complete the screening questionnaire if you:

  • Have another kind of lupus. We are only able to interview individuals with systemic lupus erythematosus.
  • A caregiver of an individual living with systemic lupus erythematosus.
  • An advocate for patients with systemic lupus erythematosus.

What are the risks and benefits?

We do not expect any risks or benefits from completing the screening questionnaire. While we will do everything we can to keep your information confidential, as with all research studies, there is a potential risk of loss of confidentiality of what you tell us. We will make every effort to prevent this.

Who will see my data and how will it be protected?

Only people approved by the Duke University Institutional Review Board will have access to your screening questionnaire data. Data will be stored on secure servers at Duke University. A code will be used on study documents that include your data instead of your name.

How will my data be used?

We will use the data to identify a diverse group of individuals to invite for telephone interviews. We may also use the data to summarize all respondents’ descriptions of their lupus.

Do I have to complete the screening questionnaire?

No. Completing this screening questionnaire is voluntary. You do not have to complete it if you do not want to. If you decide to complete the screening questionnaire, you can choose not to respond to any question or to stop answering the questionnaire at any time.

Do I get anything from completing the screening questionnaire?

Once you finish the screening questionnaire, you can enter your name into a raffle to win one of five £100 gift cards.

If you choose to enter the raffle, your name and contact information will NOT be included with your answers to the questionnaire. You will enter this information in a separate, secure page.

Who do I contact if I want to know more about the screening questionnaire or have concerns?

If you have questions about this study, please contact the study’s Project Leader, Dr. Summer Starling by email at summer.starling@duke.edu or by telephone at +1 919-660-3903. You may also contact the Duke University Health System Institutional Review Board (IRB) Office at +1 919‐668‐5111, with any questions you may have (#Pro00101660).

We need your permission to use your data: If you choose to complete the screening questionnaire, you are voluntarily agreeing for your data to be used for this research and to be used by researchers at Duke University in the United States.

We look forward to learning from you!

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