Sunscreens survey update

There has been a good response to the sunscreens survey with 2,000 respondents so far. To really make sure this survey is a good reflection of our situations, more responses are needed. Please continue to share the link in your patient network. The deadline for responses is 31st October 2016.

images

The European Society of Cutaneous Lupus Erythematosus e.V. (EUSCLE e.V.) has set up a European survey on sunscreen application in patients with lupus erythematosus. LUPUS EUROPE has been closely involved in this important project.

The aim of the observational study “Sunscreens in Patients with Lupus Erythematosus (SmiLE)” is to investigate the type of sunscreen applied by patients with lupus erythematosus and efficacy in daily life. This project was winner in the category “Leadership Community” of the Galderma SKIN PACT Award 2015. Detailed information on the study, its purpose and background are provided here: http://www.galdermaskinpact.org/winners/sunscreen/.

An online questionnaire for patients has been translated into 20 European languages. Patients with any type of systemic lupus can fill out the survey. You can go to the survey at this link and participate in this important project:

http://www.euscle.org/survey.

 

facebookShare on Facebook
TwitterTweet
FollowFollow us

About the author

Alain Cornet

    Live Facebook Feed

    Comments Box SVG iconsUsed for the like, share, comment, and reaction icons
    LUPUS EUROPE
    1 week ago
    LUPUS EUROPE

    🚨 Call for patients🚨

    🔊 INSPIRE SURVEY from the University of Cambridge.

    This survey aims to improve the understanding of neurological symptoms in SLE and other rheumatic conditions.

    Lupus is a very heterogeneous disease, which means that it affects people of different ethnic backgrounds and gender in different ways.

    That is why, to get accurate research results, as many different groups as possible must be represented in the sample.

    The INSPIRE survey was launched last year to get the patient experience on the assessment/monitoring of neurological symptoms, but they received very few responses from people from ethnic minorities.

    That is why the research team led by Dr Chris Wincup has launched a new survey.

    The new INSPIRE survey can be completed by lupus patients or their carers from around the world.

    🟣 Please share as much as possible 🟣 in order to get a sample that includes a good proportion of all ethnic groups.

    Thank you!

    bit.ly/inspire_patients_short     ... See MoreSee Less

    Play
    View on Facebook
    · Share
    Share on Facebook Share on Twitter Share on Linked In Share by Email
    View Comments
    • Likes: 2
    • Shares: 2
    • Comments: 2

    Comment on Facebook

    I did it a second time and no it went good till the end

    The survey was demolished.

    LUPUS EUROPE
    1 week ago
    LUPUS EUROPE

    Discoid lupus erythematosus (DLE) is the most common form of chronic cutaneous lupus erythematosus. It is characterised by persistent scaly plaques on the scalp, face, and ears, which can progress to scarring, atrophy, depigmentation, and permanent hair loss in affected hair-bearing areas (Source: DermNet).

    This study, published by Prof Marca Mosca et al., describes 2 cases of severe and refractory DLE successfully treated with anifrolumab, a human monoclonal antibody.

    Although anifrolumab has been recently approved for the treatment of SLE, data from randomized clinical trials have shown a significant difference in cutaneous response rate in patients treated with anifrolumab from those in the placebo group.

    While the effectiveness of this treatment in real life and in different types of skin lesions has yet to be determined, it could represent a new valid opportunity for treating DLE.

    jamanetwork.com/journals/jamadermatology/article-abstract/2798967     ... See MoreSee Less

    Discoid lupus erythematosus (DLE) is the most common form of chronic cutaneous lupus erythematosus. It is characterised by persistent scaly plaques on the scalp, face, and ears, which can progress to scarring, atrophy, depigmentation, and permanent hair loss in affected hair-bearing areas (Source: DermNet). This study, published by Prof Marca Mosca et al., describes 2 cases of severe and refractory DLE successfully treated with anifrolumab, a human monoclonal antibody. Although anifrolumab has been recently approved for the treatment of SLE, data from randomized clinical trials have shown a significant difference in cutaneous response rate in patients treated with anifrolumab from those in the placebo group. While the effectiveness of this treatment in real life and in different types of skin lesions has yet to be determined, it could represent a new valid opportunity for treating DLE. https://jamanetwork.com/journals/jamadermatology/article-abstract/2798967Image attachmentImage attachment
    View on Facebook
    · Share
    Share on Facebook Share on Twitter Share on Linked In Share by Email
    View Comments
    • Likes: 8
    • Shares: 3
    • Comments: 0

    Comment on Facebook

    LUPUS EUROPE
    1 week ago
    LUPUS EUROPE

    We know some of you missed the great seminar recently delivered by Prof. Laurent Arnaud.

    Well, no worries!

    You have the chance to see it again, thanks to the European Federation of Internal Medicine (EFIM).

    "Challenges in 2023 for Systemic Lupus Erythematosus".

    Next 29th of March at 18:00 CET (i.e. Paris time).

    Register for free here!

    us02web.zoom.us/webinar/register/WN_O5yMwjfgTS29pMKvOZfgZw     ... See MoreSee Less

    We know some of you missed the great seminar recently delivered by Prof. Laurent Arnaud. Well, no worries! You have the chance to see it again, thanks to the European Federation of Internal Medicine (EFIM). Challenges in 2023 for Systemic Lupus Erythematosus. Next 29th of March at 18:00 CET (i.e. Paris time). Register for free here! https://us02web.zoom.us/webinar/register/WN_O5yMwjfgTS29pMKvOZfgZwImage attachment
    View on Facebook
    · Share
    Share on Facebook Share on Twitter Share on Linked In Share by Email
    View Comments
    • Likes: 13
    • Shares: 5
    • Comments: 0

    Comment on Facebook

    LUPUS EUROPE
    1 week ago
    LUPUS EUROPE

    Did you miss this ERN RECONNET webinar with Lou Kawka and Prof Laurent Arnaud about #fatigue in #SLE?

    Now you have the chance to watch it!!! 😃🙌

    www.youtube.com/watch?v=7jc7SiP5BsA     ... See MoreSee Less

    Did you miss this ERN RECONNET webinar with Lou Kawka and Prof Laurent Arnaud about #fatigue in #SLE? Now you have the chance to watch it!!! 😃🙌 https://www.youtube.com/watch?v=7jc7SiP5BsA
    View on Facebook
    · Share
    Share on Facebook Share on Twitter Share on Linked In Share by Email
    View Comments
    • Likes: 12
    • Shares: 1
    • Comments: 1

    Comment on Facebook

    Thkx

    LUPUS EUROPE Uniting people with Lupus throughout Europe
    Send