Severe systemic lupus erythematosus (SLE) Study -240806

Severe systemic lupus erythematosus (SLE) Study -240806
Name*

First NameLast Name
Email*
example@example.com
Phone Number*

Area CodePhone Number
IQVIATM, a healthcare research firm (www.iqvia.com), is currently conducting an interview study. This study is sponsored by a pharmaceutical company that is working on developing a new treatment for Lupus. The purpose of this research is to learn about how people with severe Lupus think and feel about a treatment known as chimeric antigen receptor cell therapy, or CAR-T cell therapy for short. We do not expect you to know about this treatment prior to the interview. Any information you need to comment on the therapy will be provided to you during the interview. Your answers will be used to try to reduce burden for patients who receive therapies like CAR-T cell therapy and to improve the overall experience of receiving treatment for Lupus. We will be asking you some questions to see if you are eligible to participate. If we find that you meet the criteria to participate in this study, you may be asked to take part in a telephone interview.

Any information you provide to us as part of the eligibility questions will be treated as confidential. It will be combined with feedback from others like yourself and will be stored in a secure server. This means your information will be kept secure at all times. Personally identifying information, such as names and locations, will be removed from your data and your information will not be passed to any other organization without your permission. Any personally identifying information you give to us as part of the eligibility questions will be destroyed after five years for named data and 15 years for masked data after study completion.

If you are eligible to take part in this interview study, you will be provided with a consent form, which explains how the study works and your rights as a study participant.

You have the right to withdraw from this study at any time. For more information about your rights, please see our privacy notice, which is available at www.iqvia.com/about-us/privacy.
Do you consent to the information above and wish to proceed to see if you are eligible for this interview study?*

Yes, I consent to the information above and would like to proceed to see if I am eligible for this studyNo, I do not wish to participate
1. What is your current age? *
2. Have you been diagnosed with refractory systemic lupus erythematosus (rSLE) by a healthcare provider? *

YesNoI’m not sure
3. When were you diagnosed with rSLE? *
MM/YY
4. Have you been diagnosed with lupus nephritis (LN) by a healthcare provider (i.e., lupus affecting your kidneys)? *

YesNoI’m not sure
5. Have you previously undergone chimeric antigen receptor T-cell or CAR T-cell therapy for short?*

YesNoI’m not sure
6. What treatments for Lupus have you taken in the past 6 months?*
7. Have you previously experienced a situation where the treatment you were taking for your Lupus did not work as expected or did not provide the desired results? *

YesNo
7a. Was this after taking a Biologic treatment? Note that Biologic treatments can include medications such as Benlysta (belimumab), Mabthera / Rituxan (Rituximab) and Saphnelo (anifrolumab). *

YesNo
7b. Did you end up changing treatment for your Lupus because of a treatment not working as expected or not providing the desired results? *

If yes, answer below in the next question that how many times did you switch treatments?No
7b. If yes, answer below that how many times did you switch treatments?

8. Have you experienced at least 2 of the listed symptoms in the last 6 months while undergoing your current treatment for Lupus?

	Experienced YES	Experienced No
Fatigue or tiredness
Fever
Muscle pain
Abdominal pain
Increased hair loss
Hypersensitivity to sun
Anaemia
Red rash on face
Edema (swelling in the legs or around the eyes)
Hematuria (blood in the urine)
Proteinuria (protein in the urine), which often causes your urine to look foamy

[IF YES] On a scale from 0 to 10, where 0 means it does not bother you at all, and 10 means it bothers you greatly, how would you rate [symptom] when it is at its worst?

	Rate from 0 to 10
Fatigue or tiredness
Fever
Muscle pain
Abdominal pain
Increased hair loss
Hypersensitivity to sun
Anaemia
Red rash on face
Edema (swelling in the legs or around the eyes)
Hematuria (blood in the urine)
Proteinuria (protein in the urine), which often causes your urine to look foamy

14. What is your gender? Select only one option.*

FemaleMaleNon-binary / non-conformingPrefer not to say
15. What is your ethnic group? Select only one option.*

Asian or Asian BritishBlack, Black British, Caribbean, or AfricanMixed or multiple ethnic groupsWhitePrefer not to say
15. If any other please specify :
16. What is your employment status? Select all that apply. *

Working full-timeWorking part-timeSeeking work opportunitiesStudentRetiredUnable to work due to sicknessHomemakerPrefer not to say
16. If any other; please specify:
17. What is the highest level of education you have completed? Select only one option. *

Below GCSEGCSECollege degreeA LevelsBachelor’s degreeMaster’s degreeDoctorate degreePrefer not to sayOther
19. What is your ethnic group? Select only one option.*

Canadian/French Canadian/AmericanBritish (England, Scotland, Ireland)European (Italian, Greek, German, French, Portuguese etc.)AfricanWest Indian (Bahamas, Barbados, Grenada, Jamaica, etc.)South Asian (e.g., Indian, Pakistani, Bangladeshi, Sri Lankan)ChineseOther East Asian (Japanese, Korean, etc.)Southeast Asian (e.g., Cambodian, Indonesian, Vietnamese)West Asian/Arab (e.g., Afghan, Iranian, Armenian, Egyptian)FilipinoLatin AmericanPrefer not to sayOther
20. What is your employment status? Select all that apply. *

Working full-timeWorking part-timeSeeking work opportunitiesStudentRetiredUnable to work due to sicknessHomemakerPrefer not to sayOther
21. What is the highest level of education you have completed? Select only one option

Some High School onlyCompleted High SchoolSome College/UniversityCompleted College/UniversityPost graduate degreePrefer not to sayOther
Should be Empty: