Future Lupus Research

In our recent survey, people with lupus and their families told us that they thought it was important to work out why lupus occurs, and why some are more likely to suffer than others.

- We already know that more females are diagnosed than males, and that teenagers can suffer more severe symptoms than adults.

- We want to investigate the link between puberty and lupus, to see whether hormones or sex chromosomes are related to abnormalities in the immune system. Some people start puberty very early, or very late, and we’d like to see if that is linked to their disease.

- We are also interested in whether your sex, or the age you started puberty will affect how well you respond to different treatments. We would like doctors to be able to prescribe drugs in a more personalised way.

The following survey is anonymous and is a way for you to let us know if you think these are important topics for us to research. It should take no more than 3-4 minutes to complete.

Many thanks for your help. Your answers will make a real difference to our future research!

Hannah Peckham MSc, Centre for Adolescent Rheumatology, UCL

Question Title

* 1. Are you:

A person with juvenile lupus (diagnosed at or before 16 years of age)

A person with lupus (diagnosed after 16 years of age)

A person with another autoimmune disease (E.g. Rheumatoid Arthritis, Dermatomyositis, Sjogrens Syndrome, Scleroderma etc.)

A parent/carer of a person with lupus

Other family member/friend of a person with lupus

Other (please specify)

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* 2. Are you:

Female

Male

Other (please specify)

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* 3. How old are you? (If answering on behalf of a person with lupus, please specify their age)

7 years old or younger

8-10

11-13

14-16

17-25

26-40

41-51

Over 51

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* 4. How old were you when you were first diagnosed with your disease? (If answering on behalf of a person with lupus, please specify their age)

7 years old or younger

8-10

11-13

14-16

17-25

26-40

41-51

Over 51

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* 5. Do you think it is important for researchers/doctors to understand how puberty can increase the risk of getting lupus?

Yes

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* 6. Do you think it is important for us to understand how different treatments might be better suited to different sexes, or people who were diagnosed at different stages of life (E.g. before or during puberty, young adulthood or later in life)?

Yes

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* 7. Have you ever noticed a change (good or bad) in your/your child's disease symptoms during puberty, menstruation (periods) or pregnancy?

Yes

Don't know

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* 8. In the future, would you consider participating in a study investigating the link between puberty and disease? This would involve completing a questionnaire about puberty, and donating 3-4 teaspoons of blood whilst you are having a routine blood test. (This survey is anonymous- answering yes does not mean you are consenting to anything)

Yes

Maybe

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* 9. If you have any further comments for us, please use the space below. This could be relevant personal experiences, topics you feel are important, or questions you would like us to investigate.