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  • Psoriasis and psoriatic arthritis continuing data collection survey

    We have a continual process of data gathering, which we do via all the processes of joining PAPAA. This  largely unpublished data gives us a view of our demographic group, therefore allowing us to tailor our material to suit.

    We also have been surveying people with psoriasis and psoriatic arthritis since our early origins for more than 20 years. Those rich qualitative data provides us with a real life view and also helps us to put forward a collective consensus of what it is really like to live with both psoriasis and psoriatic arthritis.

    You can be part of that process and also know that whatever you say will be confidential and anonymous, it’s up to you.

    We have now developed the PAPAA survey, which aims to build and add to those previous data results.

    The sections: 

    We will not ask for your name or contact details, all submission will therefore be anonymous. There are a few compulsory sections, to help us understand who we represent.  

    About you: The answers you give will help us to raise the true impact and how it affects real people, by providing a UK wide picture. 

    Quality of life: In order to give the true effect of psoriasis and or psoriatic arthritis, we would like to know how it affects your day-to-day life.

    Research priorities: As someone who lives with a chronic disease, you have a unique insight into the issues that are important to you. We would like to gather these issues together and create a list of priorities that are important to people with psoriasis and psoriatic arthritis.

    Final comments: Your chance to say anything else not covered in the other sections, these comments will help us to provide rich information that has context and is meaningful.

    Be part of the bigger picture and get your opinions and views logged, so we can tell those who need to know exactly what you and others with these conditions actually feel, think and want to be said.

    Data from the PAPAA survey has been used in submissions to support the patient perspective in health technology assessments, with the National Institute for Health and Care Excellence (NICE), the Scottish Medicines Consortium (SMC) and the All Wales Medicines Strategy Group (AWMSG).

    Complete the survey

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  • Real world evidence - meeting your needs

    Help us, to help you, by answering a quick survey.

    We would like to understand what is important to people with psoriasis and or psoriatic arthritis, when using internet search engines for answers to questions.

    By completing the survey you will be helping us to endeavour to meet your needs.

    Complete the survey

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  • Personal stories project: Describe your journey.

    • Do you have a personal journey to share about your psoriasis or psoriatic arthritis?
    • Would you like others to know how your life has been affected?
    • Would you like to tell us about the care and treatments you have received?

    This is your opportunity to let others know what it is like to live with these conditions.

    How you were diagnosed, the treatments you received, how the appointment was delivered, or anything else that you want to share that you feel would help others in their journey living with psoriasis or psoriatic arthritis. 

    • The negative and the positive effects.
    • Share your thoughts and let others see the impact.

    It's up to you, if you just want to get something off your chest, here is your chance.

    You can submit anonymously or share your name.

    We will add your personal journey to this website and with your help build a picture of the extent these conditions have on real people and their lives.

    Please note: We will not publish your name and may edit your submission to protect your privacy and that of others mentioned.

    Share your story

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  • The APPLE Study: Asking People with Psoriasis about Lifestyle and Eating

    This study is now closed

    Have you ever wondered whether what you eat affects your psoriasis? This is one of the commonest questions that people with psoriasis have. At present, there is not enough high-quality research to be able to be able to make specific recommendations. To help answer this question, we have launched The APPLE Study!

    This is the first study of its kind in the UK. We aim to find out if there are certain diet and lifestyle patterns that are more commonly found in people with more severe psoriasis compared with those with milder forms. This research will help us understand if dietary changes could be helpful for psoriasis management in the longer term.

    Participation in The APPLE Study will involve the completion of:

    • a multiple-choice survey on life-style patterns, psoriasis, and diet
    • a diet diary

    The APPLE Study will take place online. You will need internet connection to access the online survey and diet diary.

    We strongly encourage you to complete The APPLE Study on a laptop, or desktop computer as some of the questions will not display properly on a smartphone. 

    On completion of The APPLE Study you will receive: 

    • a nutrition report
    • an invitation to attend a Webinar on “A Guide to Nutrition & Psoriasis” by Consultant Dermatologist, Dr Thivi Maruthappu

    Eligibility requirements

    • Adult (18 years of age or older)
    • A diagnosis of psoriasis by a healthcare professional
    • UK resident
    • Fluent in English

    Contact Information

    Email: dietandpsoriasisproject@kcl.ac.uk.

    Instagram: the_apple_study

     

     

     

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