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!
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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.”
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.
SarcoidosisUK will store your responses securely in line with GDPR. For more information please read the സരോകോഡിസോസ്യു കെ ഡാറ്റ പരിരക്ഷയും സ്വകാര്യത നയവും.
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?”
സാർകോയിഡിസിസ് എന്ന ലോകോത്തര ഗവേഷണ സ്ഥാപനങ്ങൾ ഈ അവസ്ഥയ്ക്ക് ഒരു പരിഹാരം കണ്ടെത്തലാണ് ഞങ്ങളുടെ ലക്ഷ്യം.
നിങ്ങളിൽ നിന്നും കേൾക്കാൻ ഞങ്ങൾ ആഗ്രഹിക്കുന്നു. എന്തെങ്കിലും ചോദ്യങ്ങൾ, അഭിപ്രായങ്ങൾ അല്ലെങ്കിൽ നിർദ്ദേശങ്ങൾ എന്നിവയുമായി ബന്ധം പുലർത്തുക.
സാർകോയിഡിസിസ്കെ നഴ്സ് ഹെൽപ്പ്ലൈൻ രോഗബാധിതർക്ക് സൗജന്യവും ഗുണമേൻമയുള്ള പിന്തുണയും വിവരങ്ങളും നൽകുന്നു.