PHOTOLUP

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PHOTOLUP

Thank you very much for participating in our survey. The aims of this survey are to better describe the characteristics and the consequences of photosensitivity in lupus patients. Indeed, in a recent online survey of 4300 lupus patients performed with European umbrella patient association for SLE, photosensitivity was reported as one of the 3 most common and bothersome SLE symptoms.

Participation in this survey is anonymous and takes approximately 15 minutes. The information collected in the questionnaire is anonymous and recorded in a computerized file by Dr Chasset and Dr Battesti for the Dermatology Department of Tenon Hospital, Paris and Pr Arnaud and Dr Felten and the Rheumatology Department of Strasbourg.

The legal basis of the treatment is the consent.

The data collected will be communicated to the following recipients Dr Chasset and Dr Battesti for the Dermatology Department of Tenon Hospital, Paris and Pr Arnaud and Dr Felten the Rheumatology Department of Strasbourg. They are kept for the duration of the study.

You can access your data, rectify them, request their deletion or exercise your right to limit the processing of your data. You may withdraw your consent to the processing of your data at any time.

Consult the cnil.fr website for more information on your rights.

To exercise these rights or if you have any questions about the processing of your data in this device, you can contact:
Dr Francois Chasset francois.chasset@aphp.fr

I consent to the use of my data for research purposes *

Yes

What is your gender? *

Female

Male

Non-binary

In which country are you currently living? *

What is your year of birth? (XXXX, example 1990) *

What is your education degree? *

No more than middle school

Some high school

Up to the end of high school

College certificate

Bachelor’s degree

Master’s degree

Doctoral studies

What is your phototype (i. e amount of melanin pigment in the skin)? *

I: White skin, very fair; red or blonde hair; blue eyes. ALWAYS BURNS, NEVER TANS

II: White skin, fair; red or blonde hair; blue, hazel or green eyes. USUALLY BURNS, TANS WITH DIFFICULTY

III: Cream white skin, fair with any eye or hair colour. SOMETIMES MILD BURN, GRADUALLY TANS

IV: Brown, typical Mediterranean Caucasian skin. Rarely burns, tans with ease

V: Dark brown skin, Middle Eastern skin types. Very rarely burns, tans very easily

VI: Black skin. Never burns, tans very easily

What is your smoking status? *

Current smoker

Past smoker

Never smoker

What year was your lupus diagnosed? (if you don’t remember, indicate an approximative year): (XXXX, example 1990) *

What is your disease? *

SYSTEMIC lupus erythematosus medically-confirmed (attested by a medical doctor)

ISOLATED CUTANEOUS lupus erythematosus medically-confirmed (attested by a medical doctor)

I have medically-confirmed lupus but I don't know if it is skin-only or systemic

I think I have lupus but it is not yet medically confirmed

Other

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