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SARCOIDOSISUK BIG SURVEY

The SarcoidosisUK BIG Survey is an online survey collecting lots of important information from sarcoidosis patients around the world. The data will be used to help find the cause of sarcoidosis and inform future research priorities. Read more about the project on this page and participate in the survey.

So little is currently known about sarcoidosis. This lack of information slows down efforts by the scientific community to look for a cause, and better treatment options. It also means clinicians are unable to properly care for patients, particularly those with progressive and multi-organ sarcoidosis.

The SarcoidosisUK BIG Survey will collect information from hundreds of sarcoidosis patients around the world. There are very few surveys collecting so much valuable information from so many patients.

The SarcoidosisUK BIG Survey has two primary aims:

1) Collecting information to direct future research into sarcoidosis. We want a better understanding of who is affected by sarcoidosis, how they are affected, the possible causes and how they are being treated by healthcare professionals.

2) Collecting information to improve and refine SarcoidosisUK’s support and information services. We want to know how SarcoidosisUK can help to further improve the lives of those affected by sarcoidosis, particularly in the UK.

CLICK HERE to participate in the SarcoidosisUK BIG Survey!

Follow SarcoidosisUK on Twitter to receive updates on the survey.

SarcoidosisUK BIG Survey

Every single response is crucial to understanding more about sarcoidosis and finding a cure. 

“The SarcoidosisUK BIG Survey is an excellent initiative. The data will be hugely useful in understanding more about sarcoidosis and it’s causes. I would urge all sarcoidosis patients to participate and will be certainly encouraging my patients to do so.”

Prof. S. Birring

Respiratory Consultant, King's College Hospital

How Was The SarcoidosisUK BIG Survey Developed?

The SarcoidosisUK BIG Survey was developed by SarcoidosisUK and our trusted research partner, Mr Mariusz Pawlik. Mr Pawlik is writing his MSc thesis on the cause of sarcoidosis at the Gdańsk University of Technology. He aims to explore the environmental, economic and social causes of sarcoidosis with the use of machine learning.

In addition more than 30 people have been kind enough to review the survey questions. This includes our Patient Ambassador, SarcoidosisUK Nurses, SarcoidosisUK Support Group organisers, SarcoidosisUK Patient Council, sarcoidosis consultants (from every major discipline), epidemiologists, immunologists, occupational health experts, geneticists, psychologists, physical therapists and environmental scientists. These people were an incredible asset to the project and credited in the survey itself, thank you!

What Will Happen To My Data If I Participate?

SarcoidosisUK intend to use the data we collect anonymously and as group data. This means you will never be identified in any published research. 

Before you take part you will need to have read and agree with the SarcoidosisUK Data Protection and Privacy Policy and consent to SarcoidosisUK and SarcoidosisUK’s trusted research partners using your anonymised data in research into sarcoidosis. 

SarcoidosisUK will store your responses securely in line with GDPR. For more information please read the SarcoidosisUK Data Protection and Privacy Policy.

Why Should I Participate In The Survey?

The more participants we have, the more meaningful the data will be. This means it will be more likely that we can make important discoveries, such as into the possible cause of sarcoidosis. 

If you have sarcoidosis but are only affected mildly, consider your participation an act of solidarity with all those who struggle every day with symptoms and whose lives are turned upside down by the condition. 

My Sarcoidosis Is 'In Remission' or Undiagnosed, Should I Take Part?

Yes. We are interested in anyone affected by sarcoidosis. This includes anyone who is ‘in remission’ (burnt out symptoms) or anyone who has an unconfirmed diagnosis. Please just ensure you select the correct answers at the start of the survey when you are asked “How does sarcoidosis affect you?”

Related content from SarcoidosisUK:

Research

SarcoidosisUK fund world-leading research into sarcoidosis. Our goal is to find a cure for the condition.

Contact

We would love to hear from you. Please get in touch with any questions, comments or suggestions.

Nurse Helpline

The SarcoidosisUK Nurse Helpline exists to provide free, quality support and information to anyone affected.

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