Click here to view the informed consent.
Why are you being asked to be in this study?
You are being asked to be in this research study because you have eczema or topical steroid withdrawal (TSW) syndrome or are a caregiver for someone with eczema or TSW. Please note that you are only eligible to participate in this study if you have previously been diagnosed with eczema or are a caregiver to someone who has received an eczema diagnosis.
What will you do if you join the study?
If you join the study, you will be asked to take a brief online survey about an eczema questionnaire. The purpose of this study is to learn more about a questionnaire designed to help patients and caregivers understand eczema management and prepare to discuss treatment choices with their doctor. We want to determine how well patients and caregivers understand this questionnaire and how helpful it is for preparing for shared decision-making conversations with their doctor.
You will be asked to read the questionnaire and then answer some short survey questions about the questionnaire. This should take about 5-10 minutes total. The survey and all related materials will be in English.
What are the risks and discomforts?
It is unlikely that you will experience any risks or discomforts beyond what would be experienced in a typical online survey.
Will this study directly benefit you?
There are no direct benefits associated with participating. However, the information we collect will help us improve educational tools for people with eczema.
How will your privacy be protected?
Every effort will be made to protect your privacy and confidentiality by not collecting anything that may directly identify you or your family. All data will be kept on an encrypted, password-protected server. The researchers will not collect your name, address, phone number, or any other identifying information.
Who is conducting this research?
This research project is being conducted by four patient advocacy organizations: Asthma and Allergy Foundation of America, Global Parents for Eczema Research, Allergy and Asthma Network, and International Topical Steroid Awareness Network, which work to support people affected by eczema and other inflammatory and/or allergic diseases. This eczema questionnaire is being developed with Incyte, a pharmaceutical company.
Do you have to be in this study?
You have a choice about being in this study. Participation in this study is completely voluntary. You do not have to be in this study if you do not want to be. There will be no penalty if you decide not to participate or if you decide to stop at any time.
What will happen to your information?
The data we collect will be used for this study but may also be important for future research. Your de-identified data may be used for future research. We intend to publish the results in medical literature.
Who can answer your questions?
If you have any questions or concerns regarding this study, please contact Hannah Jaffee, AAFA Research Director at hjaffee@aafa.org or (202) 974-1229.
CONSENT STATEMENT
I hereby consent to participate in this study titled "Validation of an Eczema Shared Decision-Making (SDM) Questionnaire: Assessing Acceptability and SDM Preparation."
I have read and understand the purpose of this study. I understand that:
- Information obtained in this survey will help improve education about eczema management
- This survey and all related materials are in English. By continuing, I confirm I can read and understand English well enough to provide feedback on the questionnaire
- The study results may be published in medical literature
- All data will be kept under electronic encryption and password protection
- The researchers are not collecting any information that can be used to identify me as an individual participant
- My participation is voluntary, and I can withdraw at any time without penalty