What is the “Side Effects of Steroids” survey?

The “Side Effects of Steroid” survey is an IRB (Institutional Review Board) approved international online survey designed to bring to light the burden of steroidal medication on sarcoidosis patients. The survey has been designed by Sarcoidosis physician experts in collaboration with sarcoidosis patients. The survey is being distributed with the support of an international group of pulmonary and sarcoidosis advocacy groups. The survey is “unidentified” meaning that we are collecting no information that could be used to identify you.

Who can take the “Side Effects of Steroids” survey?

Any person who has been told they have sarcoidosis by a medical professional can take this survey. We welcome responses from patients who have and have not taken steroids for sarcoidosis.

What is the purpose of the “Side Effects of Steroids” survey?

The goal of the “Side Effects of Steroids” survey is to understand what side effects sarcoidosis patients experience from steroids to encourage…

• Future processes to identify and prevent harmful effects of steroids.
• Future research to develop treatment pathways that minimise side effects for sarcoidosis patients
• Future research to identify new drugs for sarcoidosis

If you want to learn more about the survey, please click on the links to be taken to the survey (available in multiple languages.) You may leave the survey at any time without saving your answers if you choose not to participate in the survey.

The ELF Sarcoidosis patient advisory group (PAG) have supported the design and dissemination of the survey, as well as translations.